Prednisone why not stop abrutly

I am looking for some advice to help get diagnosed in Germany. I am 36M and have had lower back pain almost my entire life and about 3-4 years ago it got much worse almost overnight. I have the usual telltale signs of AS such as morning stiffness, pain that improves with movement and worsens while sitting or laying down, brain fog, fatigue, and what I think is uveitis (dry eyes, occasional blurry vision, light sensitivity). It has become so bad that without NSAIDs I cannot function and struggle to get through 24 hours. Despite being reasonably fit and active my general health is starting to deteriorate, even with the NSAIDs, as I am unable to run as much due to pain and inflammation, I can't seem to gain any weight, and my energy levels fluctuate wildly.
On top of all of this I am having trouble navigating German doctors and the health system. I have seen a Rheumatologist at Charite here in Berlin but my test results have all been negative. I am HLA-B27 negative, my bloodwork supposedly does not show anything significant, the ultrasound only showed some inflammation at my ankles, and a recent MRI showed no inflammation or damage apart from a minor bulged disc. Throughout the diagnosis I have been taking Etorican (lactose-free) 60mg twice daily because my Rheumatologist said that it would not affect the results much.
Why am I convinced that it must be AS? Well while I was in Australia my GP gave me some Prednisone for some short term relief and it eliminated ALL of my symptoms. I had no idea it was possible to feel that way and had no idea how much pain I was actually feeling until then.
I have lived in Germany for 6 years and from my experience it seems that doctors do not trust patients and unless something shows up on a test result then the patient is just making it up and is under a lot of stress. With this in mind I feel like it would be almost impossible to get a diagnosis of nr-axSpA here and so I have a few questions:

1. Has anyone been able to get a diagnosis of nr-axSpA in Germany with a negative MRI?
2. Is my best chance to stop taking the NSAIDs and go in for another MRI?
3. Does anyone have a recommendation for a public Rheumatologist in Berlin with experience diagnosing nr-axSpA?
4. Should I just try and get diagnosed back home in Australia (where symptoms without positive test results are still taken somewhat seriously) and then return to Germany?

So, I just wanted to go through my arduous journey of the last few years and get y'all's thoughts/just vent and tell the story of my proverbial diagnosis roulette.
This is going to be a literal wall of text and I am leaving so so so much out, so please bear with me.
Outside of my childhood of being considered "sickly" by my family and friends, I never really felt too far outside of the realm of normalcy. Sure, I had gotten diagnosed with GERD (eosinophilic esophagitis) in high school which seemed to explain all of the stomach issues I always had, it didn't feel too debilitating or difficult. The only odd thing was sometimes sleeping 12+ hours and still being tired but I figured that was normal. However, I distinctly remember being evaluated for Marfan's syndrome as a kid but being told that my brother and I didn't quite meet the criteria and genetic testing was too expensive at the time.
Fast forward past high school, and I graduated undergrad and got my first job. But then I just kept getting sick once a week, over and over, until I finally quit that job. I attributed it to stress or lack of sleep. Figured what I needed was a change of scenery, so I got certified and went overseas to teach English. Frustratingly, that only lasted 3 months. I couldn't seem to do it despite my working 60+ hour weeks trying to make it work.
Came back home to a new job after looking for months. 6 months later, I went on medical short-term disability. I was quite literally dozing off driving to work every morning and said enough was enough. I didn't want to hurt anyone and my mental health was in the tank. Half a year later, it was called obstructive sleep apnea. A year, a CPAP, BiPap, and finally ASV machine later, I am getting treated for what turned out to be central sleep apnea. This was 3 years after and I had returned to school to try and get a masters in public health. I was finally feeling like I was getting back to a healthy normal. My mental health and ability to focus dramatically improved. I even got diagnosed with ADHD, and that was like a lightbulb moment too.
I was finally feeling great. Never felt better, was excelling in my epidemiolgy program and happy that I found my niche. However, life had different plans. It began with a bang, where I severely sprained my right wrist playing with my dog. Despite the intense pain, I was still able to move it decently well so the ortho didn't believe it was too bad. I had to go back twice and they scheduled an MRI. Full thickness tear of 2/3 portions of the scapholunate ligament, and a minor perforation of the TFCC. Lasted two weeks in the small wrist cast they put on, but couldn't deal with the pain. I did occupational therapy and got my first OT saying I could be hypermobile. At some point during that journey, I sprained my left wrist just as bad. That's when they sent me to a rheumatologist.
I started getting incredibly fatigued (back to the levels of pre-treatment of my sleep apnea) and began to experience intense pain in my joints, along with muscle spasms. I sprained my ankles bad enough to need PT for a few weeks. None of my blood work ever showed anything and everything else never panned out so they said it was anxiety and fibromyalgia. I gave up but knew it was wrong. I said screw it, I refuse to let someone tell me this is just anxiety. I know anxiety, I know what it does, and it doesn't cause joint pain and strains all of the time. The celebrex they gave me only worked to an extent. So, I went back to the rheumatologist and said I don't want pain killers, I just need a diagnosis that makes sense. Due to the low back, ankle, hip, shoulder, elbow, and neck pain they said it was non-radiographic axial spondyloarthritis (nr-axSpA). Then I went on cimzia until I graduated. It seemed to help but never for long. I could barely do school, and was worried I would be disabled and unable to work.
Came home and the rheumatologist here and they took me off of everything because there was no objective proof. My xrays were normal, MRI's didn't show joint degradation, and my blood work didn't show inflammation/any markers for any of the possible autoimmune conditions. I literally had to get lucky before this doctor believed me (after 3 months) and came in with my elbow swollen. He immediately said it was seronegative asymmetric rheumatoid arthritis. It is already somewhat uncommon to be seronegative, but asymmetric on top of that? But I finally had a diagnosis again, so I just accepted it.
I got lucky and found a work-from-home job during this time. My fatigue got a little better. However, nothing ever worked for long, not the methotrexate, prednisone, or Humira they put me on. The Rinvoq I am on now doesn't seem to stop flares either. I kept spraining my wrists, ankles, shoulders, elbows, knees, whatever. I kept asking for help with the pain, asking why my muscles hurt so bad and kept spasming, asking just for anything to help. Neurologist cleared me. Pysch said it wasn't a mental health issue. Doctor after doctor after doctor and nothing seemed to tie everything together. I asked them to check for hypermobility, they said I didn't have it after a half-hearted attempt. I looked into everything, thinking I was going crazy, and constantly being told I was by doctors, friends, and family. It hurt so dang much feeling like I was the only person advocating for me.
Throughout this all, I was in and out of PT. Once for my wrists again and once for my shoulder and neck. The wrist PT said I needed to get looked at for hypermobility but I was just so tired of doctors and had asked both rheumatologists so far. Then months later, the PTs for my neck and shoulders said so as well. I said screw it, and scheduled a dermatologist thinking that was enough. 6 months and right before my appointment I got COVID so I had to cancel. Another few months and I am done with neck and shoulder PT but never felt "healed". They told me to request a special PT from my rheumatologist, one who dealt specifically with hypermobility because they all believed I had hypermobile EDS. I was finally done with questioning whether or not the rheumatologist got it right, with the constant negative test results, no inflammation ever, and continual constant pain. I convinced the rheumatologist to send me to this new PT.
I went in, and this lady immediately starts going on and on about things I can't do. I was confused, and asked "don't we need to do any tests?" She basically said I can already tell you're hypermobile. You held out your arm earlier and your elbows went hypermobile. She double-checked my knees and had me stand, where they both bent too far backwards. My thumbs could touch my forearm. Someone finally knew what to look for and believed me. She said it was definitely hypermobility, likely hypermobile EDS, said she would send her report to my rheumatologist and asked me to get a referral to a doctor with experience in this disease.
So now we are here. I am still struggling with everything, and funnily enough am looking for "high-top" shoes after a recommendation from that PT. I am waiting for my second appointment with them and got referred to the docs I need. I want to cry because it seems like I finally found the missing link. I also want to scream because despite all the years of being called a hypochondriac, my symptoms were anxiety, and all of the random sprains and rolled ankles since childhood, I feel like I am stuck with being in pain. I just feel lost.
Is it crazy to believe that the rheumatologists had it wrong? I remember back to feeling a pop in the same elbow that got me diagnosed with rheumatoid arthritis but didn't attribute it to anything because that was normal. I even told the rheumatologist and he said it likely wasn't a sprain because I could move it. I am sure it was now a sprain. Everything makes sense the more I read about this disease. The links to GERD, sleep-apnea, flat feet, constant rolled ankles, bad eyesight, double-jointed in my fingers, and so much more. Is it possible that the blood work was telling the truth? Can there be hope that despite my pain, I won't have to further damage my body and immune system with all of these rheumatologic drugs? I don't know if I can muster the strength anymore to advocate for myself and bring this up with the rheumatologist again. I am afraid of the young 'healthy' male stereotype and am so done with doctors who don't believe me.
Honestly, any advice, stories, resources, or whatever yall have I would love to hear. I just needed to rant and write my thoughts down. If you read this far, thank you. Also, if you have any suggestions for high tops I am open to receiving them!

Ringing 24/7 in my left ear. Been at it for about 2 weeks. I have been hoping it gets better, then it has not.
No real reason why this started.
I took a hearing test and everything was good except the very high range of the left ear.
Doctor found nothing wrong with my ear. Wants me to get an MRI, or take prednisone first. High dosage, which scares me even more.
I am just worried this is bad. I feel depressed. I feel like something might be growing in my head. I just feel tired all the time and want to sleep. Simply because I stop thinking when I sleep. When I wake up, its loud loud ringing. For some reason, I actually hear it in the right ear in the morning also when I wake up. Only then, most of the time. But always the left.
I just don't know what to do. I am sorry you guys are dealing with this. I feel like everything is over now.
Thanks for letting me vent

I supposedly have MCAS, but is it mastocytosis? Also PSA for people in Portland, Oregon at bottom. A couple months ago I started allergy shots at a local clinic. They hit me extremely hard, like I had a severe flu and all I could do was lay in bed. The doctor upped my ketotifen and Cromolyn to the max and I discovered that Benedryl Extra Strength is ridiculously effective and I started being able to function again, even though I still felt bad. I made it through the lowest tier of doses and then they started injecting me with the next strongest tier and things got really bad. I started having anaphylactic shock responses to basically everything (never had anaphylaxis before that I know of) and sometimes to nothing at all - heart rate going up to 150, almost passing out, extreme vertigo, profound sense of doom, nausea, difficulty breathing, etc. So I stopped the shots about a month ago but the symptoms just kept coming. I started having seizures whenever I eat anything that isn’t rice cakes with almond butter and cheese, and even that I can only eat so much. So that’s basically all I’ve eaten for weeks now, and all I can do is lay in bed to conserve energy so I don’t have to eat much. The only thing that’s made a difference is a different doctor put me on Prednisone, and that’s the only reason I can even eat the rice cakes. And the allergy doc gave me an inhaler which helps with breathing, but makes my heart beat faster too. My blood tests are coming up with low neutrophils, and a low C Compliment, and I have persistently disregulated blood sugar and anemia. I also had a DEXA scan that showed Osteopenia. I also always test positive for lupus on general screenings but negative for it on lupus testing (which the allergy doc ignored when I told her and is just convinced that I have lupus now). Does any of this sound familiar to those of you with Mastocytosis? Have any of you heard of the KIT D816V blood test and know whether it’s worth doing instead of a bone marrow biopsy? Have any of you had bad reactions to allergy shots like this? Was your health permanently worsened? Did anything help? What type of doctors were able to do anything about it? Has anyone had any side effects like this (paradoxical reactions) to Cromolyn or Ketotifen? Does anyone here have any weird mystery immune issues like this lupus thing I’m talking about? Anyone here have seizures in relationship to histamine/food? What helps? I’d also appreciate any suggestions for the lowest histamine foods that have worked for you, because I’m really trying to find other foods that can work out for me. So far it seems like carrots, and weirdly cheese and nuts, and then rice cakes are all I’ve got. Thanks for reading and for the help, I really, REALLY appreciate it.

PSA Time: if any of you are in Portland, Oregon I highly warn you against the Know Allergy Clinic. I genuinely feel they’ve recklessly put my life in danger in so many ways and times, while also treating me with contempt as though I’m making all this up and wasting their much more valuable time. Like at my last doc appointment, when I said “this can’t be normal” the doc said this “happens all the time”, and to see her again in September, while also not being able to tell me why this is happening or what to do about it, or how not to die of starvation or anaphylaxis in the next few months. I don’t even know if I can use an Epipen because they increase your heart rate (which I only found out through Google, not even the allergy clinic) and mine is already so freakishly fast (possibly hypertensive anaphylaxis though), and she wouldn’t help me with that either, despite the fact that they have mini Epipens there that could be safer for me to try in an emergency. And when I said all I could eat is rice cakes to the nurse who asked why I looked ill, she was like “Well, that’s what I like to eat at breakfast and lunch”. 

I’m in extreme need of help. Also PSA for people in Portland, Oregon at bottom. A couple months ago I started allergy shots at a local clinic. They hit me extremely hard, like I had a severe flu and all I could do was lay in bed. The doctor upped my ketotifen and Cromolyn to the max and I discovered that Benedryl Extra Strength is ridiculously effective and I started being able to function again, even though I still felt bad. I made it through the lowest tier of doses and then they started injecting me with the next strongest tier and things got really bad. I started having anaphylactic shock responses to basically everything and sometimes nothing at all - heart rate going up to 150, almost passing out, extreme vertigo, profound sense of doom, nausea, difficulty breathing, etc. So I stopped the shots about a month ago but the symptoms just kept coming. I started having seizures whenever I eat anything that isn’t rice cakes with almond butter and cheese, and even that I can only eat so much. So that’s basically all I’ve eaten for weeks now, and all I can do is lay in bed to conserve energy so I don’t have to eat much. The only thing that’s made a difference is a different doctor put me on Prednisone, and that’s the only reason I can even eat the rice cakes. And the allergy doc gave me an inhaler which helps with breathing, but makes my heart beat faster too. My blood tests are coming up with low neutrophils, and a low C Compliment, and I have persistently disregulated blood sugar and anemia. I also always test positive for lupus on general screenings but negative for it on lupus testing (which the allergy doc ignored when I told her and is just convinced that I have lupus now). Have any of you had bad reactions to allergy shots like this? Was your health/MCAS permanently worsened? Did anything help? What type of doctors were able to do anything about it? Has anyone had any side effects like this (paradoxical reactions) to Cromolyn or Ketotifen? Does anyone here have any weird mystery immune issues like this lupus thing I’m talking about? Anyone here have seizures in relationship to histamine/food? What helps? I’d also appreciate any suggestions for the lowest histamine foods that have worked for you, because I’m really trying to find other foods that can work out for me. So far it seems like carrots, and weirdly cheese and nuts, and then rice cakes are all I’ve got. Thanks for reading and for the help, I really, REALLY appreciate it.

PSA Time: if any of you are in Portland, Oregon I highly warn you against the Know Allergy Clinic. I genuinely feel they’ve recklessly put my life in danger in so many ways and times, while also treating me with contempt as though I’m making all this up and wasting their much more valuable time. Like at my last doc appointment, when I said “this can’t be normal” the doc said this “happens all the time”, and to see her again in September, while also not being able to tell me why this is happening or what to do about it, or how not to die of starvation or anaphylaxis in the next few months. I don’t even know if I can use an Epipen because they increase your heart rate (which I only found out through Google, not even the allergy clinic) and mine is already so freakishly fast (possibly hypertensive anaphylaxis though), and she wouldn’t help me with that either, despite the fact that they have mini Epipens there that could be safer for me to try in an emergency. And when I said all I could eat is rice cakes to the nurse who asked why I looked ill, she was like “Well, that’s what I like to eat at breakfast and lunch”. 

My first visit, I was seeing her because I was having a flare (my first) and naturally had some questions. The entire appointment was about how my progesterone only birth control was 100% going to give me a stroke, and soon unless I let her remove the implant right there in office. She said no lupus patient should ever be on any form of birth control no matter the circumstance (I also have endometriosis). I was hoping it was a one time thing and she wouldn’t say anything odd afterwards.
Second visit, she told me that plaquinil is not known to and has never caused any eye related side effects whatsoever (why would they test for it then)? I figured maybe I had misunderstood her.
Third visit, she told me that lupus nephritis cannot cause kidney damage or loss in kidney function over time, and the only thing it can cause is high cholesterol. Again, thought I’d misunderstood or misheard her.
Fourth visit, she was confused as to why I had been put on prednisone. I was put on prednisone because the flare wasn’t responding to more conservative treatment and was getting worse. I told her that if she has questions about my treatment, she should contact my nephrologist and talk to him about it because he probably knows more details about it than me. She said no, she wouldn’t do that.
Most recent visit, she said all my tests looked good and I was in remission. She also didn’t let me look at my test results on the computer screen when I asked. I had not seen them yet at that point. Right after my appointment with her (literally in the car home), I got a call from my nephrologist, who, looking at the exact same test results, is so concerned about my kidneys he put my on another immune suppressant. Protein level in urine shot up from 20 to 800 from a week ago. Double stranded dna was also way up from last week.
Every single visit has resulted in me having to talk to my other doctors and ask if what she said was correct. It just keeps adding up.
At this point I don’t think I can trust that the information she gives me is accurate and she’s not willing to communicate with the rest of my care team if she has questions. She is fairly young and has been practicing since 2017 so she shouldn’t be operating on decades old information, nor is she super new, it has been a few years.
I want to stop seeing her but no other rheumatologists in this hospital system are accepting patients and my insurance throws a fit if I don’t have all my doctors under one system.
At this point I’m not sure what to do. My lupus has only affected my kidneys so far. I was advised a long time ago now to have both a nephrologist and a rheumatologist throughout my life but I’m not comfortable seeing this one and right now she’s the only option. Frankly I don’t see the point in continuing to pay for her to give me incorrect information. Do I just drop her and only have a nephrologist for a bit until someone else is accepting new patients?

I know that I’m lucky to have survived my first covid infection that lasted 21 days despite taking two rounds of Paxlovid. I also feel lucky I was able to stay on one of the antidepressants I had already been taking. But I’m not sure if I can keep up with even a low activity life. I could use some encouragement. I’ve taken so much in my own hands and wonder when is the point at which someone in the medical profession helps or even anyone in society? No one in my family believes me so I don’t even bother asking for help.
When I got infected, I had already been diagnosed with autoimmune arthritis for which I take an immunosuppressant and mental illness for which I took both an SSRI and strattera. Because I was immunosuppressed, I was isolated socially during the pandemic but doing okay. The strattera was used to help my attention issues. After my infection, I started Paxlovid and discontinued strattera to protect my heart.
after I finally tested negative, I started getting abnormal heart rate alerts while at rest from my watch. I had chest pain. Although I had previously been a distance runner, I would end up in bed for days after even brief exercise. Needless to say, I wasn’t able to restart strattera. My HRV was shot.
I am allergic to NSAIDs so my main way of managing arthritis pain was increasing my pain tolerance through distance running. But I’m no longer able to run. I have trouble walking. My rheumatologist said I can only have prednisone if my knees swell to the size of grapefruits.
Separate from the fatigue and heart issues, I have brain fog. It’s much worse than my attention issues before covid. I’m sensitive to every day stimuli, have word finding and memory issues, and sometimes feel mentally exhausted. My doctors have not done the paperwork that can help me get accommodations at work and I’m getting tired of searching for doctors.
What I’ve done so far: - I had been having what seemed like allergic reactions to nothing. I eventually started taking Xyzal and quercetin. I had read about those on the internet. I also take vitamin D and turmeric.

• Noticing that my hemoglobin MCHC and MCH were low and my RDW was in range but at the top of the range, I convinced a NP to order vitamin D, iron, ferritin, and TIBC. I found my iron was okay but ferritin and iron sat were low and TIBC on the high side of normal. The NP and my psychiatrist did not think these would be sufficient to account for my complaints but I thought why not knock out some low hanging fruit? And at least later no one could attribute my dysautonomia to being anemic.
  
• I have been having GI issues and can’t stand the iron pills. But I feel I have no choice.
  
• I stopped eating aged cheese. This was the only food trigger I found.
  
• I eat more salt.
  
• I thought inflammation in my brain might be making matters worse. I tried an induction course of ketamine as a sort of Hail Mary. It did help but it’s very expensive. My Gad-7 and PHQ-9 are no longer showing more than mild anxiety and depression but my brain fog and fatigue remain despite not being moody. And who wouldn’t be moody if they could no longer work, run, cook, think, stand up for a shower, or speak as they had previously done?
  

I couldn’t find anyone who would write for LDN so I tried getting it online. My appointments is at the end of June. I don’t know if I can make it that long.
I am so tired. Physically. Mentally. Emotionally. I shouldn’t have to review my own labs and beg the medical field to do even simple blood tests that would explain fatigue. Vitamin D, iron tests, ANA…this would take the person almost no time to order. Sure, the forms that would allow me to get accommodations at work are much more involved.

I randomly got very sick a few years ago. I am not sure of the cause, but I believe it may have been COVID, which I believe unfortunately spurred on a pretty severe autoimmune/inflammatory reaction. It came on very sudden, first with brain fog, then a dull pressure headache, and then muscle twitching, what felt like a fever, neuropathy on the left side of my body (It began in my face and went downwards, used to affect both sides but only the left side now), ear ringing, throbbing headaches, upper body burning pain, dizziness, memory issues, neck stiffness, sinus inflammation that caused watery mucus, and other issues. I remember one day about a month into my issues, I had an extreme warmness in my face and nearly constant ear ringing on and off. It was the strangest thing.
I was able to see a PCP about a month into my issues. My PCP did not seem to consider my issues of an urgent nature, even with sudden neuropathy, memory loss, dizziness, etc. I had a CT scan of my brain 3 months after initial illness which showed mild volume loss and possible encephalomalacia.
It took me a year to finally see a neurologist for it due to waiting times. The first one I saw was dismissive and literally told me to "wait it out" and see if I got better (I didn't). The second one I saw, and saw the longest, didn't even see me personally the first time, and had his nurse look at me instead, and did really nothing for my issues save for trying a very small dosage of Gabapentin for a few months as well as vitamin supplements, which I stopped taking due to it not doing anything for me. The third one I saw for a second opinion of the second one told me "I don't know what's causing your symptoms" and just left it at that. I saw a rheumatologist in 2022 who also didn't do anything for my neuropathy, just more blood work testing.
I recently found out the second neurologist I saw who I saw for years was successfully sued for malpractice while I saw him, but in another state. I believe he does telehealth neurology. He was sued in Georgia and settled for 175,000 dollars in late 2022. I had been seeing him since late 2021, and last saw him in person in late 2023 where he blamed my issues on "stress" and left it at that.
I told numerous doctors/specialists about chronic body inflammation feelings, such as intense upper body burning, head pressure, dizziness/vertigo, memory issues, neuropathy, etc. and they have never ordered a spinal tap to see if there was something in the CSF causing the chronic feeling. I have had brain MRIs that showed possible idiopathic intracranial hypertension with mild CSF buildup in the optic nerve and a partially empty sella turcica, but again, no spinal tap was ordered because my eye exam by a neuro-ophthalmologist was clean and showed no swelling. My brain MRIs also showed volume loss possibly caused by encephalomalacia, again, no spinal tap done.
I've had blood work for lupus and celiac that was negative, and an ANA rating that was barely positive. Normal rheumatoid factor and negative for Sjogren's as well. I just checked and I believe I am negative for vasculitis as well, Antineutrophil cytoplasmic antibody test was negative looking back at my testing in 2022. I also had a sinus CT scan a year into my issues that showed mild sinusitis. I am not diabetic but I was pre-diabetic when this began. Glucose testing has been normal, cholesterol is fine, lipids are fine. B12 is normal, but vitamin D is low.
It has been almost 3 years now and I still have neuropathy in certain parts of the left side of my body (mainly my face and genitals, I'm male and was born male) and again, nothing was done for me regarding a spinal tap, which is the only test outside of a PET scan that I haven't done which could be helpful for me as far as I know. I saw that third neurologist for a second opinion, and all he did was say maybe to get a spinal tap if I have chronic headaches, but other than that, like I said, he said outright he didn't know what was causing my symptoms.
I cannot work with how I feel, and it feels like neurologists and doctors in general left me to rot and deal with the chronic issues on my own, and now I'm going to be stuck with long-term, permanent issues such as nerve damage in my face and genitals because no doctor cares. I have ED and anorgasmia now along with the neuropathy that affects my genital area. It's just on the left side for some reason. It used to be tingling/burning on the left side of my genital area and face and now is reduced sensitivity issues. In 2021 I had a very sharp pain on the left side of my penis when I touched the right side of it, it was very scary and made me believe the nerve may have died, but that went away with very slow improvement, but that side is still not back to normal.
I still sometimes have dizziness and headaches, for instance, if I'm in a car and I watch the cars speed by us at an intersection, I'll feel sort of dizzy. It's not as bad as it was, but it's still not normal to feel like that, and no doctor has done anything for that or suggested it.
Am I wrong to think a spinal tap should have been ordered? Is there any reason they didn't, even after I asked? 0 out of the 3 neurologists I've seen in the past three years or so recommended one, so I did try getting second and even third opinions. The first neurologist genuinely just brushed me off, he didn't even order any testing. Just sent me on my way without a follow up appointment after saying to "wait it out".
I live in America and am on my state's Medicaid. I recently switched PCPs (my previous one was condescending and didn't seem interested in my issues) and the new PCP referred me to a new neurologist I'm going to see later this year, but it just feels at this point all they can do is assess the damage and not fix it due to it being so long since I got sick and my issues never really totally fixing itself.
I had an MRA of my head last month that was clean thankfully, so I think I didn't have a hemorrhagic stroke or some sort of blood vessel damage in my arteries. I saw a neurosurgeon about two weeks ago that I last saw in 2021 who still believes my cerebral atrophy (which I'm guessing is the volume loss likely caused by encephalomalacia) is abnormal for my age (mid-20s). The neurosurgeon's notes say my current neurologist believes I may have small fiber neuropathy as well as a cognitive disorder, but he has not prescribed a single thing since the low dosage of Gabapentin over two years ago.
The only real testing I have left is neuropsychological testing which will be a few hours. I am 90% positive that my issues are from something, likely a virus, causing severe chronic inflammation all over my body including my head. I was never in the past 3.5 years given anything to treat that inflammation.
I recently saw a new neurologist which is my 4th neurologist since 2021. He seemed genuinely interested in what had happened to me and found the symptoms frustrating because of how vague they were/are, but it was in a "I wish i knew so I could help you" way, which I've never seen with a previous doctor I've seen. He said a spinal tap in 2021 may have been useful but didn't think it was essential testing for my issues, said he might have tried Prednisone for a couple of weeks to see if it helped with inflammation, but that was it. He said since I'm still seeing very slow improvement, my nerves may still heal, but is that true, even this late into it? I feel the previous neurologists I saw didn't care at all, and I finally found one that does, but it's too late to make a difference. He said trying B12 supplements and Cymbalta might help. He wants me to get a lumbar MRI to see why I have nerve issues in my genital area. He didn't think I had GBS/AIDP or something like that either, but he did think a viral cause could be possible. He was all I could ask for a specialist like this, but again, seems too late to matter. I just don't know what to do.
TL;DR: Got very sick years ago, told doctors of body weakness and pain, what felt like inflammation in my body, nerve damage, memory issues, etc. was not given any real treatment for what was still occurring in my body, which seemed to be chronic severe inflammation going on. If I get told I have permanent nerve damage/brain damage that was most likely from what I believe it to be, what would constitute the doctors I saw falling below the acceptable standard of care? Does anything in my story so far seem like negligence from doctors?
Please feel free to ask questions, and apologies for the length of my post.

38M
6ft
100kg
White
2 years
Currently taking Vyvanse, Lexapro, Cetirizine
No drug use
Ex-smoker
This experience has happened to me 6 times over a period of 2 years and each time it comes on rapidly, lasting for 5-10 minutes. The first time was close to if not the most intense pain I've ever felt, and I immediately asked my wife to call emergency because I thought I was having a stroke or heart attack or something.
However, by the time the ambulance arrived the symptoms had mostly subsided and after the EMTs ran several tests there was nothing out of the ordinary. EMTs are of course limited in what they can determine and so they recommended I go to the hospital for further tests, but it was late in the night and with a big work meeting in the morning I ultimately decided not to go and to follow up with my GP instead.
In retrospect I probably should have gone to the hospital. It has happened a few more times since then but luckily none of the subsequent episodes have been as intense or painful as the first. Still I'm worried they haven't stopped (the most recent being this week) and none of the doctors I've seen so far have provided an answers.
A typical episode goes like this: I'm standing in the shower (only one episode occurred while walking down the street) and suddenly my lungs slightly start to burn as if I've inhaled something strange. Within seconds my head is in intense pain and the pain radiates all over my head and into my neck, shoulders, chest. It comes on quick and continues to escalate over what feels like 40-60 seconds.
It's not throbbing or stinging, just a broad dull pain over most of my upper body and especially my head. The first time the pain was so intense I could barely think and I legitimately worried I was going to die.
It also feels like I can't breathe when it's happening. The lung pain itself actually subsides very quickly, but it starts to feel like I'm not getting enough oxygen.
Sitting down and concentrating on my breathing seems to help, but I can't tell if it actually helps or it's just what I instinctively do each time before the episode is over.
The only other symptom (which only really happened the first time) was tingling in my hands and fingers once the pain started to go away after a few minutes.
There seems to be no explanation for this combination of symptoms, and the multiple GPs I've seen have been relatively dismissive, especially after I say the episodes have been less intense over time. They don't seem to really grasp how painful it was, and one even suggested it was a panic attack or something psychological (I can 100% assure you it was neither - I was not panicking and this was real physical pain). Whether it is getting better or worse over time, I still want to know why it happened in the first place or how to avoid it potentially getting worse in the future.
I've had a chest x-ray which found nothing and my blood work hasn't come up without any abnormalities. Someone suggested I'm inhaling too much steam in the shower, but I've taken thousands of showers in my life without any issue and it's not like I suddenly started taking steamy showers a couple years ago. Plus one episode did occur while I was outside.
It's also not related to the apartment or specific location because I've moved twice since this started.
I started taking Vyvanse for ADHD a few weeks before the first incident, but doctors don't seem to think there is a connection. I've taken Lexapro for almost 15 years, and Lexapro withdrawal can cause a combination of headache/chest pain but these episodes presented very differently and did not coincide with missing any Lexapro doses.
The next recommended step from my current doctor is to get a CT scan to check for any abnormalities in my brain, and I plan to get it done in the next couple weeks.
So far I haven't found any possible causes online that add up. There is no accompanying cough or residual lung issues. I even actually considered at one point that someone was poisoning me with Thallium but then I read that it also causes your hair to fall out, which hasn't happened to me.
Other possible relevant information: I had a severe unexplained chest infection/cough in 2019 that didn't go away for a couple months until I took a round of prednisone. I also developed an unknown allergy around the time of my chest infection and if I don't take cetirizine every day I can randomly go into anaphylaxis. I didn't get COVID until after the first couple episodes had already happened.
TL:DR: The title. It has happened 6 times in 2 years. It's terrifying and painful but doctors don't seem to have any explanations so far. Going to get a brain scan in the next couple weeks.

Will be going to my PCP next week what questions should I be asking? So far nobody can explain why I feel as bad as I do and I’m wondering if I need to ask for endocrine referral. Symptoms: extreme fatigue, headaches, acne, thinning brittle hair lost its shine but greasy scalp, rapid weight gain, hba1c has been around 5.5 since gestational diabetes a couple years ago and I can’t seem to get that or LDL cholesterol down, joint pain, legs feel “heavy” it’s hard to exercise because of shortness of breath. This has been going on for six months much worse the last three. SO SO much worse the week before my period. Got much worse for a bit after taking prednisone for a cough a month or so ago which I stopped taking after three doses because I had horrible pain and pins & needles in my feet so I could not tolerate. These labs were drawn the week after menstrual cycle when I’m usually feeling my best (my cycles are very heavy) and were done at 9/10am ish. For context I work three overnight shifts a week and this was done on a day off when I’m awake during the day. I see iron deficient anemia but that has been the case my entire adult life and these symptoms are worsening.
HGB: 10.8 Ferritin: 10 Vitamin D: 22.5 Progesterone: 2.7 Cholesterol: 225 LDL: 146 Iron saturation: 11 Cortisol: 22.3
Other labs were drawn but these were the only flagged results.

I feel like I’m cooked but I need some answers. Everything is normal. Blood, vitals, everything. But randomly 20-30 minutes after I ran 3 miles (which is not out of the ordinary for me) my stomach just started bloating/giving me a ton of pain and it slowly progressed to the point where I was sweating a lot, and no position I sat or laid in was helping. I eventually moved into a room with cold AC and that eased me up a bit but I had already had someone call an ambulance because I wasn’t sure what was going on and I was in severe pain. Shortly after being in the AC it went away. Granted, I’m still bloating but not nearly as severe as it just was. I’ve never had a cramp that bad before so I decided to go to the hospital anyway to get it checked out.
Currently on 40mg prednisone and tapering down 10mg this Thursday while doctors figure out my next maintenance medication.. they had me stop Lialda and canasa while on pred but it’s made my stools a lot bloodier, and other than that I’ve been feeling fine. My diet is heavily restricted either I just don’t know why this happened. I’m happy to answer any questions to provide info but some insight on what I can do to prevent attacks like this in the future would be amazing.

am i the problem?
TLDR at the bottom
So i was adopted into a pretty shit family at 2 years old.. for reference i have cystic fibrosis and got a double lung transplant at 17 years old... my family has never really taken my health seriously and my dads threatened to hit me a few times growing up and would constantly yell at me about shit that i couldn't do since i was bed bound before my transplant.. and I'm pretty sure my mother is narcissistic considering what 3 of my siblings have said and how she's treated me.
I'm currently living with my sister 36F and her child (my nephew) and I'm out of the environment with my parents though i still have contact with my parents and my adopted sibling age 12 (this is important for later)
Now to get into the more complicated part of this and the relationship that confuses me
in 2022 I met My friend and her Mom
I was 17 at this time I'm now 19 soon to be 20
Her Mom quickly started supporting me and acting like a mother figure to me coming to my medical appointments, buying me things etc calling me her son saying how I'm her boy.. and after 10 months of knowing them it was offered to me to live with them when they moved out of their place. after about a year or less she offered to adopt me, I declined this because something felt kinda off about it since I've only known them for a small amount of time.. i also have a family and was adopted once and i didn't want to be adopted twice, another reason i declined was because it would ruin the relationship with my 12 year old sister and i didn't want to do that
after this she became kinda cold and i was struggling with my mental health due to medication from transplant and got diagnosed with bipolar type 2 during a bad episode on prednisone and an adhd med, My cat of 10 years died and it came to my friends death anniversary so my mental health crashed hard
during this episode i became short tempered and distanced myself from everyone, i did apologize for my behavior after i came out of it however My friends mom got mad at me and threatened to be done with me if i ever acted in the way i did again and said i was no longer allowed to live with them
it's worth mentioning that i don't really know what i did during this episode and she's refused to tell me only ever saying "I'm not getting into it" my other friends said i didn't seem to do much besides stop talking to them for a bit and would get frustrated easily..
after this she just stopped talking to me as much and became cold and only replying to me occasionally
a month ago she started acting motherly again out of nowhere which really confused me especially after the threat of abandoning me... so i decided i couldn't handle the back and fourth anymore.. I told her I loved her but i couldn't handle the hot and cold behavior anymore how i don't understand why she calls me her son but I'm not treated as an equal even though what i got told was I'm her son
the reply i got to this was I'm not equally her son and I never was because i declined the adoption and my behavior during my mental health episode... how there was nothing about her or her feelings in what i said and how everything is always about me, how i guilt trip and that i need to look into borderline personality disorder and that we were done.
additional notes to try and keep this uh fair? After my mental health episode i went to the gym, I've been going to therapy every week and overall I've been doing really really well... and so far with coping mechanisms i have been able to control my behaviour better
perhaps I am the one to blame... idk
TL;DR: adopted at 2 years old with health issues and a difficult family environment. A friend's mom initially provided support but became distant after I declined her offer to adopt me after less than a year of knowing me. During a mental health episode, I became distant, leading to tension. Despite efforts to heal the relationship, she got mad at me and said I'm not "equally her son" due to declining the adoption and my mental health.

I'm looking for any advice, recommendations or past experiences. My 7 y/o Lab X developed a small pin sized puncture on his abdomen on January 5th, 2024. It wasn't healing well and presented as abcess in February 2024 we did antibiotics and it was getting better until it got so much worse. We opted for surgery on March 30th 2024 due to the growing concern it was a malignant tumor. A biopsy was preformed after removal. Anyone currently experiencing this, please please please do the biopsy before the surgery. It may seem like an unnecessary extra step but if I could go back in time I would. I wasn't warned on any risks of metastasis, he wasn't given any preventative medication. They examined him March 29th and performed the surgery March 30th. I'd like the emphasize the prior to the surgery, despite the 5" tumor, he was a happy and healthy dog.
The day after surgery I noticed small bumps beside his armpit, in the shaved area and outside of it. 5 days later these grew and started to degranulate. I was in contact with the vet and they suggested it may he a trauma wound from the surgery/shave and not to worry about it too much. Despite its degranulation I was given nothing but gabapentin to help manage pain and antibiotics for the incision site. April 6th I was informed it was a high grade 3 mast cell tumor and he had 4-6 months to live. I opted to go for a referral to the onocogist and despite constantly being in contact with the vet due to severity of his new tumors growth, they somehow forgot to send the referral. It wasn't until I asked to know where the referral went that I was told they 'resubmitted the request as urgent".
Throughout the 3 weeks of waiting for the onocologist to call, I went through every corner of the internet and have put Ollie on any supplement that has any positive reviews. Maybe its all snake oil idk.
I put him on benedryl and pepcid, based on Google recommendations which the onocologist has recommended I continue to do.
The onocologist put him on prednisone and we start chemo tomorrow. They said there is 0 hope of treatment and that the chemo/prednisone could be used to reduce symptoms so he can have some quality of life for the weeks/months he has left.
I know there's likley no miracle that will save my baby but I wanted to know if anyone had their dog went through this, if chemo will bring back his quality of life and allow his ulcerated tumor to heal. Or if I'm just prolonging his suffering.
He is truly the purest good boy and I feel so devastated. I'm angry. Why didn't the vet recommend a biopsy first? Why wasn't he given any medication to stop the swelling/degranulation while we waited for the onocologist. Why did the referral get "resubmitted" ( I am well aware this is the professional way to say they forgot to send it). Was this negligence or just purely a mistake? Why didn't they put him on antihistamines prior to surgery if they were concerned about cancer? Why did I pay 3200.00 to make my dog worse based on a vets recommendations?
Maybe I'm just angry, venting, grieving. Any advice or past experiences are appreciated thankyou.

I'm looking for any advice, recommendations or past experiences. My 7 y/o Lab X developed a small pin sized puncture on his abdomen on January 5th, 2024. It wasn't healing well and presented as abcess in February 2024 we did antibiotics and it was getting better until it got so much worse. We opted for surgery on March 30th 2024 due to the growing concern it was a malignant tumor. A biopsy was preformed after removal. Anyone currently experiencing this, please please please do the biopsy before the surgery. It may seem like an unnecessary extra step but if I could go back in time I would. I wasn't warned on any risks of metastasis, he wasn't given any preventative medication. They examined him March 29th and performed the surgery March 30th. I'd like the emphasize the prior to the surgery, despite the 5" tumor, he was a happy and healthy dog.
The day after surgery I noticed small bumps beside his armpit, in the shaved area and outside of it. 5 days later these grew and started to degranulate. I was in contact with the vet and they suggested it may he a trauma wound from the surgery/shave and not to worry about it too much. Despite its degranulation I was given nothing but gabapentin to help manage pain and antibiotics for the incision site. April 6th I was informed it was a high grade 3 mast cell tumor and he had 4-6 months to live. I opted to go for a referral to the onocogist and despite constantly being in contact with the vet due to severity of his new tumors growth, they somehow forgot to send the referral. It wasn't until I asked to know where the referral went that I was told they 'resubmitted the request as urgent".
Throughout the 3 weeks of waiting for the onocologist to call, I went through every corner of the internet and have put Ollie on any supplement that has any positive reviews. Maybe its all snake oil idk.
I put him on benedryl and pepcid, based on Google recommendations which the onocologist has recommended I continue to do.
The onocologist put him on prednisone and we start chemo tomorrow. They said there is 0 hope of treatment and that the chemo/prednisone could be used to reduce symptoms so he can have some quality of life for the weeks/months he has left.
I know there's likley no miracle that will save my baby but I wanted to know if anyone had their dog went through this, if chemo will bring back his quality of life and allow his ulcerated tumor to heal. Or if I'm just prolonging his suffering.
He is truly the purest good boy and I feel so devastated. I'm angry. Why didn't the vet recommend a biopsy first? Why wasn't he given any medication to stop the swelling/degranulation while we waited for the onocologist. Why did the referral get "resubmitted" ( I am well aware this is the professional way to say they forgot to send it). Was this negligence or just purely a mistake? Why didn't they put him on antihistamines prior to surgery if they were concerned about cancer? Why did I pay 3200.00 to make my dog worse based on a vets recommendations?
Maybe I'm just angry, venting, grieving. Any advice or past experiences are appreciated thankyou.

I'm working through recovery...posting here for physician awareness since I was mis-diagnosed a number of time. My faith in Christ has been key to my recovery. I have also rediscovered my faith through this process.
Timeline of My Hearing Loss and Recovery:

• April 25: Began vomiting profusely but felt better the next day.
• April 28 4:00 AM: Woke up with a 75% reduction in hearing in my right ear.
• April 28, Noon: Consulted a prompt care doctor who observed swelling and prescribed antibiotics. I'm a bit of an "ear geek", so I had a camera otoscope and was able to take pictures of my eardrum throughout this process.

Right Ear 28 April 24, 1131 (doctor confirmed fluid)

• April 28, 6:00 PM: Condition feels like it worsened, despite improving imagery. Went to the ER. Diagnosed with Eustachian tube disorder but was told, "there is nothing I can do for you." The ear drum looked like fluid was out, and the redness was going down. Since sound did not come back, I believed something was very wrong.

Right Ear 28 April 24, 1744

• April 28, 7:00 PM: Purchased an ear popper from CVS to unclog my tubes, which was ineffective. Tried thumb taps, leading to fluctuating hearing.
• April 29, 3:00 AM: Woke up in a panic with worsened symptoms, hearing whooshing and robotic sounds, feeling like the hearing loss exceeded 75%. It looked like there was some darkness in my ear drum, so I figured it was fluid.

Right Ear 29 April 24, 0337

• April 29, 5:00 AM: Drove to the ER at a military hosipital, seen promptly.
• April 29, 5:30 AM: After urgent consultations, got an ENT specialist on the phone and was soon seen.
• April 29, 7:00 AM: Examined by two ENTs who performed a scoping and tuning fork test, found no issues with my Eustachian tube disorder.
• April 29, 9:30 AM: Underwent an audiogram, results indicated idiopathic sudden sensory hearing loss.

https://preview.redd.it/0cdj533kpuyc1.png?width=474&format=png&auto=webp&s=3f6f54196253ca6ed046955f10c333c9a2822a92

• April 29, 12:00 PM: Receive first intratympanic injection. Dexamethasone and placed on 60 MG of prednisone for 2 weeks. I also started Vitamin C, Vitamin E, selenium, magnesium, and dual extract lion's mane (I own a lion's mane coffee company, Shroomffee, and didn't see any contraindications, so I added to see if it would help).

Right Ear 29 April 24, 1244

• April 29, 1800 (I start tracking my word recognition scores...I would use my Bose Hearphones at a set level, and record results. It was just a basic test to see if there was some improvement.

Test Results, + word is correct, - word is wrong

• April 30, 12:48 PM

Right Ear 30 April, 1248

• May 1, 7:46 PM

Right Ear 01 May, 1946

• May 2, 6:48 PM

Right Ear 02 May, 1848

• May 3, 4:54 PM

Right Ear 03 May, 1654

• May 4, 5:15 PM

Right Ear 04 May, 1715

• May 5, 10:16 AM

Right Ear 05 May, 1016

• May 6, 8:03 AM

Right Ear 06 May, 0803
So, I am on the mend, and I hope this post raises awareness with doctors that this is a SERIOUS condition. I was misdiagnosed by 5 doctors, but because I have been active in the ear communities, and had awareness, I knew the questions to ask. I could have lost my hearing. I am forever thankful, and filled with grattitude.
I did not expect to make it through this, I stayed in faith, and prayer, and I have also reconnected with God throughout this ordeal.
What worked: Prayer, getting seen early in the process, getting access to both injections and steriods. Sleep. Rest. Lot's of rest. Rest is critical. Getting supplements vitamins helped. Celebrating and being thankful for the little gains. Keeping a diary.
Why it happened: I think there was a viral/bacterial infection caused by vomitting. My son threw up in our family van, and I had to leave to clean it up. Later I was diagnosed with viral gastroenteritus.
My log/diary summaries are here. I was going to try to clean them up a bit more, but I need to rest for a bit.
April 29

• 18:41 - Beeps sound staticky when the volume is set to 4 down from the top. Took steroids at 17:30 followed by a Z-pack at 18:30. Initially felt improvements upon waking, but symptoms worsened during a trip to the store.
• 19:45 - Experienced a severe tinnitus spike after taking B3 30 minutes earlier. Noted transient low-range tinnitus; ear felt less full by 20:30. Sniffing triggered tinnitus spikes, but relaxing my jaw and taking deep breaths helped alleviate them.

April 30

• 17:56 - A largely uneventful day, disrupted by my son having a car accident just before a planned hike. Experienced various tinnitus spikes throughout the day, including a low tone around 500 Hz that cycled in and out. Despite some relief from the feeling of fullness in my right ear, overall hearing seemed not to improve. Continuing to focus on my faith, seeing this as a sign to reorganize my life. Leftover cricket-like sounds from my noise machine lingered. Interestingly, amplifying my hearing temporarily alleviated the sensation of fullness.
• Hearing Check
  • Left Ear: Start at 80 Hz, stop at 8,000 Hz.
  • Right Ear: Start at 1,500 Hz, stop at 8,000 Hz.
  • Identified a hearing gap between 80 and 1,500 Hz as the primary area needing attention. Sounds within 1,500 to 8,000 Hz were tinny but audible.

May 1

• 02:44 - Managed to get a good night's sleep and felt well-rested with minimal morning activities, prompting a decision to undertake a hearing test.
• Hearing Check
  • Left Ear: range from 40 Hz to 9,000 Hz.
  • Right Ear: range from 1,960 Hz to 8,000 Hz.
• Utilized a sonic tone generator for a more detailed test, revealing nuanced hearing levels in various frequency ranges.
• 24:00 - Third day on steroids (20 mg at noon) led to a major tinnitus spike, which mostly subsided by 17:00. Testing with Bose Hearphones at -4 showed minimal word recognition; planning to practice with an audio book (Gospel according to John) to improve.
• 18:15 - Noted a significant reduction in fleeting tinnitus and high-pitched spikes; experienced a low-range hum or fluttering that was manageable.
• 20:21 - Noticed slight improvements in bass tones with Hearphones, despite a tinny quality.

May 2

• 06:17 - Remarkable improvement: able to connect to my headset and discern words clearly at a slightly reduced volume setting (-5 dB). Experienced joy in understanding more of the audio content from the book and song "Buttermilk Biscuits".
• 17:00 - Endured a significant tinnitus spike after a drive to pick up my son. Earbuds seemed to exacerbate the condition, prompting a decision to rest and focus on final exams before retiring for the night.

May 3

• 12:00 - Received the second intratympanic steroid injection; the procedure went smoothly with minimal discomfort. Continued use of headphones indicated no significant change in hearing, suggesting that improvements might occur overnight.

am i the problem?
TLDR at the bottom
So i was adopted into a pretty shit family at 2 years old.. for reference i have cystic fibrosis and got a double lung transplant at 17 years old... my family has never really taken my health seriously and my dads threatened to hit me a few times growing up and would constantly yell at me about shit that i couldn't do since i was bed bound before my transplant.. and I'm pretty sure my mother is narcissistic considering what 3 of my siblings have said and how she's treated me.
I'm currently living with my sister 36F and her child (my nephew) and I'm out of the environment with my parents though i still have contact with my parents and my adopted sibling age 12 (this is important for later)
Now to get into the more complicated part of this and the relationship that confuses me
in 2022 I met My friend and her Mom
I was 17 at this time
Her Mom quickly started supporting me and acting like a mother figure to me coming to my medical appointments, buying me things etc calling me her son saying how I'm her boy.. and after 10 months of knowing them it was offered to me to live with them when they moved out of their place. after about a year or less she offered to adopt me, I declined this because something felt kinda off about it since I've only known them for a small amount of time.. i also have a family and was adopted once and i didn't want to be adopted twice, another reason i declined was because it would ruin the relationship with my 12 year old sister and i didn't want to do that
after this she became kinda cold and i was struggling with my mental health due to medication from transplant and got diagnosed with bipolar type 2 during a bad episode on prednisone and an adhd med, My cat of 10 years died and it came to my friends death anniversary so my mental health crashed hard
during this episode i became short tempered and distanced myself from everyone, i did apologize for my behavior after i came out of it however My friends mom got mad at me and threatened to be done with me if i ever acted in the way i did again and said i was no longer allowed to live with them
it's worth mentioning that i don't really know what i did during this episode and she's refused to tell me only ever saying "I'm not getting into it" my other friends said i didn't seem to do much besides stop talking to them for a bit and would get frustrated easily..
after this she just stopped talking to me as much and became cold and only replying to me occasionally
a month ago she started acting motherly again out of nowhere which really confused me especially after the threat of abandoning me... so i decided i couldn't handle the back and fourth anymore.. I told her I loved her but i couldn't handle the hot and cold behavior anymore how i don't understand why she calls me her son but I'm not treated as an equal even though what i got told was I'm her son
the reply i got to this was I'm not equally her son and I never was because i declined the adoption and my behavior during my mental health episode... how there was nothing about her or her feelings in what i said and how everything is always about me, how i guilt trip and that i need to look into borderline personality disorder and that we were done.
additional notes to try and keep this uh fair? After my mental health episode i went to the gym, I've been going to therapy every week and overall I've been doing really really well... and so far with coping mechanisms i have been able to control my behaviour better
perhaps I am the one to blame... idk
TL;DR: adopted at 2 years old with health issues and a difficult family environment. A friend's mom initially provided support but became distant after I declined her offer to adopt me after less than a year of knowing me. During a mental health episode, I became distant, leading to tension. Despite efforts to heal the relationship, she got mad at me and said I'm not "equally her son" due to declining the adoption and my mental health.

Hey everyone. I feel as if my entire life doctors have not taken me seriously because of my age? Please read *BACKGROUND* for what I experienced birth to now. My mom has had 2 aneurysms removed via craniotomy 3 years ago. She had migraines severely and got surgery for deviated septum about 7 years ago. Read *CURRENT* for what is occurring now.
So, I am looking for advice on where to go / who to see? What further tests should I ask for and from what kind of doctor? Am I imagining all of this? Should I get second opinions if only seen 1 doctor in the field? Links of IIH to TMJ or COVID? Who is most at risk of IIH: autoimmune people? children? those with multiple TBIs? Is it lupus? Do autoimmune issues affect menstrual cycles?
I have seen neurologist, cardiologist, chiro, and ENT. Cardio 100% healthy. ENT referred me for CT scan. Chiro made pain worse in shoulders and neck. In process of trying to get appointment with allergist, dermatologist, rheumatologist, and opthamalogist (cannot find a neuro one, but will continue. may travel.). Routine bloodwork normal. Awaiting call to schedule my ANA. Awaiting mothers genetics testing.
*BACKGROUND\* I am 29 now. At 1 month old, I had 2 spinal taps. At the ages of 7 and 10 I had a TBI resulting in multiple stitches to my head, to which still stand out in my hairlines and are prominent in my forehead. At 14, I was diagnosed Epstein Barr Virus. Treated at home. Since a teenager, I am sensitive to light and changes. MY body twitches and it's very scary. At 16, diagnosed bursitis in both knees. PT helped temporarily. I was not in sports. At 19, had my first menstrual cycle and unsure if related, but had swollen hands and ankles, redness, tenderness. Pain meds helped temporarily. At 19 again, I had mono and was hospitalized for 6 days. Cleared after able to speak again At 20, I got Lymes disease. I was treated with medication. At 21, had a severe migraine, runs in my family, was told to just relax and take steroids. The sinus issues continued to increase. No body pain aside from temples pounding, no eyes affected. This same age, went to dentist, got diagnosed TMJ. At 24, had COVID, and since then have had shortness of breath, fatigue, Cardio cleared me healthy. At 26, I saw a neurologist for vision problems. I passed out in shower and tunnel vision occurred on the shampoo bottles. Looked as if they were in a funhouse mirror squiggling around. Since then, I see like, black dots in my vision when I look around. If I stand up too fast or shift positions too fast, instantly I am dizzy and lose balance and breath. My left eye will kind of sway to the right, almost as if I have a lazy eye. I can't snap out of it. The sinus pressure and migraines continued to increase in pain and difficulty to go on with my days. When seeing neurologist, I got an EEG stay in hospital. I was diagnosed PNES (psychogenic seizures, so basically, not sure what is happening) and epilepsy (although they said i have a very small percentage of seizure activity in brain, but they did not have see any. The only thing they thought was odd was my body twitching to light sensitivity).
*CURRENT\* Since then, the last 3-4 years, I have had a sinus infection every other week. Each one increasing in fluid [[edit: pressure/swelling, im not sure why i said fluid]]. I have tried nasal rinses, netti pots, vapo, etc. Anything you name, it has not worked. I had powered through them with Tylenol extra strength. Today is May 2, 2024. On April 13, 2024, I started feeling a sinus come on. I employed all methods I usually do. To no avail, this time. April 16, I am bedridden. April 17, I stand up from my nap, get dizzy, crawl to shower to be in cold water, and I passed out. I saw black. April 18, temples felt like they were gonna explode. Eyes about to pop out of my head. Eyes super dry. I had sharp shooting pain across left breast. Sternum felt tender. Neck stiff. Neck cracking, popping, crunching. Shoulders tightened. Sitting up and fixing posture increased in pain. Laying down increased in pain. Base of skull heavy and tender. Felt like air bubbles in my ribs when I would stretch or sit upright. My right middle and ring finger went ice cold. April 19, I get a chest x ray and EKG; came back fine. Gave me prednisone for sinus for 8 days. Did not work. April 20, I saw a chiropractor. Did not help, actually increased the pain. April 25 I see ENT. I tell him the symptoms I've been experiencing: jaw pain, jaw popping, neck crunching, popping grinding, shoulder stiff, neck tender, eyes hurting, nasal congestion, temples pounding. I said my ears feel like they have to pop as if I'm in an airplane or always feel waxy/fluidy but when I clean them nothing happens. Thought maybe it was related to the TMJ. Everything is clear and said I could have an anatomical issue. Anytime my neck crunches or pops, my phlegm from my post nasal drip feels like it got loose, but never is. It stays there. I am waiting to schedule CT scan. Fingers go cold every so often still. As I wait, it is becoming increasingly difficult to do anything without feeling like I just ran a 5k with a steel helmet weighing down my skull and the heaviest rucksack on my shoulders/back. I can't sleep, my headaches are so bad at night when I lay down. I try lifting my head, lower body. Lift body, lower head. side sleep with lift, side sleep without lift. I am at my end. [[edit: I have also had a terrible cough, and sometimes the mucus I force myself to cough up has a pink/red tint. Blood??? I gotta stop forcing it to come out maybe lol]]
Since April 13th, I have had all these symptoms listed above, some of them since I am a young child. A child with multiple immune issues, at that! What the actual .... is going on?

30F Hx ADHD, POTS, Asthma, GERD, Allergies, C-section (2019), Knee Arthroscopy (2023). Current meds Prilosec, Yaz, Diclofenac and Zyrtec. I was started on Vyvanse in early 2023 for ADHD. Titrated from 20mg to 40 mg and back to 30 mg which I’ve been at for over a year with period breaks anywhere from 2 days-2 weeks. For the past 8 weeks I’ve had a daily fever (99.5-101) along with joint pain (elbows, wrists, shoulders and fingers) and back pain (upper-mid back) and severe fatigue. Onset was sudden and it’s been responsive only to high dose NSAIDS and prednisone. I’ve had a plethora of labs done and have been negative for everything besides extremely low ferritin (9), positive ANA 1:360 (negative ENA) and elevated CRP (was 32 but is now down to <3 after 2 rounds of prednisone). After trying everything I can think of to get myself feeling better, I decided to stop taking my vyvanse and just see if I felt better.. it’s been a little rocky but now that it’s been a whole week I’ve realized that my energy levels are improving, my fevers are practically nonexistent, and my joints hurt WAY less. Now the mistake I made was that I started the diclofenac a few days before dropping the Vyvanse. But I don’t think once daily diclofenac would work almost as effectively as the prednisone did… so it seems that dropping the Vyvanse is (possibly) eliminating my symptoms. I need to see how I feel if I skip my diclofenac but I’m not ready to test it out yet because I’m finally getting some much needed reprieve from the pain and fevers. So THEORETICALLY why would Vyvanse cause fevers and joint pain?

Hi all,
I've read your posts daily and it's helped me to find my own path through this journey so thought I would share my own story in the hope that it will help others/ I will find others with similar symptoms. I am not typical haha. I will summarise but it's a long story.
For as long as I can remember I have had tinnitus and mild hearing loss in my left ear which was slowly worsening.
October 2020 I gave birth to my second daughter. When I was breastfeeding her at 3.5 weeks old I experienced by first episode of vertigo. Very fast spinning, clockwise direction and on the diagonal. My vertigo only lasts between 10-60 seconds (hence why it took me 3 years to get a diagnosis). I went to the ER, had another attack in the hospital which was witnessed by multiple doctors and was told I was having a seizure. Brain MRI - clear. Diagnosed with epilepsy. 4 weeks of complete hell. Up to 10 attacks a day (only 10-60 seconds), bed bound, with a newborn lol. Brain fog, off balance, struggled to speak and think clearly. Vertigo stopped after 4 weeks but had a few more attacks a few months later. Due to this my vestibular system was checked and they found a frequency issue in my left ear. Epilepsy was a misdiagnosis, menieres suspected but vertigo too short so not confirmed. Veritigo disappeared on its own for 3 years! During this time I saw a specialist for VM and TMJ and both were ruled out.
​
October 2023. Vertigo returned. Roughly 1 episode every day or so. Not as violent as 3 years ago. I tried to ignore it for a few weeks and then my hearing dropped badly so I got a hearing test. Confirmed the deterioration and a friend who worked for cochlear set me up with an incredible specialist. He said he had never seen a patient with my symptoms but locked in Menieres. I started on a diuretic (Furosmide) which was great for a week or two and then vertigo returned. I then tried an 8 day course of prednisone which worked while I was taking it but vertigo returned straight after. I then started on Betahistine which improved symptoms but I realised that I was better with the diuretic so took both. This was great for 4 weeks until the vertigo returned. My specialist decided to insert a grommet, put in 2 shots of steroids while I was asleep and I got IV steroids. I'm 4 weeks post surgery and feel the best I have in a long time. Brain fog has completely lifted, tinnitus is still there, hearing seems a bit better, no pressure and no vertigo. It's early days but so far I would say it was definitely worth it !
I am really struggling with the fear of the vertigo coming back. Sometimes I feel a bit off balance but it's hard to distinguish if it was real or my messed up vestibular system tricking my brain. Any tips or ideas for this? Anyone else out there who has really short vertigo attacks? I feel like I am triggered by hormones and possibly the weather. I always have problems in the hotter months (Australia). I have tried low salt with no change. I haven't tried no caffeine yet. I'm very addicted lol. I've been thinking about trying a naturopath and acupuncture. Anyone with tips/success stories with this path?
​
​

Hello and thank you for any assistance. I have a 4 year old border terrier mix, male neutered, who has been steadily gaining weight over the past two years. We live in the Chicagoland area. He is now 38 pounds, but maxed out at 43 pounds in February. His ideal weight is around 25 pounds. Our vet sent a complete thyroid panel to a university and it came back normal. Labs WERE normal until this month. We feed fresh dog food, Happy Howl brand, and do not feed table scraps or treats. We have stopped free feeding dry dog food. He receives under the recommended portion size for his ideal weight every day. He is walked every day, approximately 1 mile. We have a fenced in backyard and he is allowed to run around 6 or more times per day and he loves chasing and catching rats and running with his shepherd friend. Someone is always home with him so he is never crated and he’s not getting into anything he shouldn’t be. Our vet was very insistent he lose weight for obvious reasons, so we started taking him to agility classes. He was performing agility for up to 1 hour regularly and loved it, so I bought everything for use in the backyard at home. After two months of this, we brought him back to the vet and his weight had gone up again. They insisted we were over feeding him and didn’t believe he was getting the amount of exercise we said, so I sent in pictures of his food nutritional information and how much I was feeding him. They said everything looked fine, and if he continued to gain weight by the next visit we might look into evaluating for Cushings.
On April 15, I noticed a small lump on his neck, but it was so minor I thought it was a fat roll or deposit. By April 18, the lumps were on both sides, the size of baseballs, and inhibiting his breathing. I immediately brought him to the ER vet, who felt his neck lymph nodes and stomach, and rushed him back to ultrasound his stomach. This was interesting to me as I had repeatedly brought up his hard, round, lumpy stomach to my normal vet and was told he was just fat because I was over feeding him and not getting him enough exercise. The ER vet found nothing concerning for cancer on the stomach ultrasound, but thought the neck lymph nodes were lymphoma and took aspirate. I paid to have it sent out for analysis at a university after the ER vet told me from his analysis it looked like lymphoma, but I could get a second opinion. Also of note, his blood glucose was mildly elevated which the ER vet said could be from inflammation, and his platelets were low. I spent 4 days crying while waiting for the aspirate results.
On the 23rd, the results came back as reactive, not lymphoma. He had been taking 10 mg of prednisone a day since the ER visit on the 18th. They recommended he see an internal medicine vet to evaluate his stomach and lymph nodes, but the next available appointment is not till June 10, and I have scheduled that. They also suggested the lymph nodes could be from dental issues, so I brought him to a regular vet to evaluate his teeth and get his teeth cleaned. They found a heart murmur and he needs to have an echo (May 14) before they can clean his teeth. This vet also said his teeth only have mild tartar, we do brush them, and he didn’t think such mild dental disease could cause baseball sized lymph nodes.
The most interesting thing which no one can explain, is that since starting the prednisone he has for the first time in 2 years begun losing weight. He was 43 pounds at his vet visit in February, 43 pounds and some ounces at the ER vet, 38 pounds when we had him evaluated for his dental, and since then I’ve been curious and weighing him at home and he is steadily dropping ounces every day. His poop is also much more formed than before.
So I have three questions, while I wait for further testing by the internist and for his dental, number one, why would prednisone cause him to drop weight like this when he could never lose before, and number two, what could cause such swollen lymph nodes if not lymphoma? The vet sent multiple slides in case he missed cancer cells on his first aspiration. My third question is, is it safe to leave him on the prednisone till we see the internal medicine vet June 10?
Thank you so much for any assistance! This dog means the world to me and I will see any specialist if it means it will help him get better.

tldr: Even though docter and i disagree I dont want to throw away this opportunity because im severe bed bound and he is the only one left who cares and has cochones to treat me after 1.5y of ‘your blood looks fine people’ but he is a lyme docter first and me/cfs second and not up to date or open to debate long covid angle
so my question would be if its possible to combine dr suggestion intravenous antibiotics (doxy, flagyl and erythromycin ) and mine IVIG, plasma or corticosteroids like methyl prednisone or budesonide for auto immune encephalitis
like Is it safe/possible to supress and strengthen your immune system at the same time? or more like playing with fire?
or intravenous antibiotics and oral or liquid ear corticosteroids to stop the accute symptoms of auto immune encephalitis?
and if not possible together, which should i treat first or based on my symptoms, what should be priority?
thq
~~~~~~~~~~~~_______~~~~~~~~~~~~~
5m long(er) read ————————————-
Even though docter and i disagree I dont want to throw away this opportunity because im severe bed bound and he is the only one left who cares and has cochones to treat me after 1.5 of your blood looks fine people but he is a lyme docter first and me/cfs second and not up to date or open to debate long covid
So he think my markers ( low CD38, low vegf) high tgfbeta high cd14 dysautonomia are lyme markers and cd14 surrogate markers for LPS dysbiose resulted in high gram negative bacteria like prevotela x 40 and thats why i have ME LC and dysautonomia and auto immune encephalitis and sibo
But my 1.5 y relentless research led me to believe other hypothese

• cd14/cd16 high is a marker for consistent elevated monocytes white blood cell constantly wandering looking for kill in my brain triggering auto immune ( encephalitis) and also other glycoproteins like spike blockin my occitane brain lymph vessels so all toxic waiste builds up in my brain so my myelin leaking out of my spine neck shoulders give this coat hanger syndrome, losing elastane and collagen results in stiffening of arteries developing myalgic encephalitis and triggering autoimmune (encephalitis) events at the same time (short said)

-my low vegf and low cd38 points to hypoxia , chronic ischemia resulting in muscle weakness degeneration also seen in als and ms. Also seen in long covid. endothelian vascular damage? or dysautonomia ? sure Not lyme
-markers high tgfBeta with high th1-)th2 shift +4 dominance and high th17 is seen in long covid and full body auto immune systemic inflammatory out of control reaction like sclerodoma and allergies . makes it more difficult to clear virus bcz bad balanced immune reaction
-i recently started showing hypogammaglobulinemia which if remembered a common variable immune deficiency syndrome bcz of covid hijacking and exhausting my B/or tcells? again seen in Long covid and hiv not in lyme.
Sure lyme could be reactivated like babesia igg igmm shows but its not the root cause like professor wants me to believe
But Different opinions are not necessarily bad if we can unite and treat both at same time so if you still read and followed my add tired non native english sick brain itt comes all down to this question:
‘IS it safe/possibly to do intravenous antibiotics doxycycline flagyl erythromycin b12 glutathione and at the same time IVIG or plasma or Budesonide? or intravenous antibiotics and oral or liquid ear corticosteroids to stop the auto immune encephalitis?
and if not together, based on my symptoms ( auto immune encephalitis, common variable immune deficiency, immune exhaustion and dysfunction ) and ( persistence covid rna autoantibodies, reactivated bacteria)
Which should i address first?
im in a flare with mild confusion delirium tripping nausea hyperalert painsomnia not here feel-in myself so feel my eq judgment maybe off with important decision to make
so any down real down to earth summary’s , anecdotes or suggestions woud be highly appreciated

36F, central Kentucky. I have past posts here about my battle with pictures included, so you can look at my history.
I finally got into see a proper rheumatologist last week after dealing with a physicians assistant at a rheumatology office for a year and a half with no help other than her telling me it's just fibromyalgia and osteoarthritis in my SI joints that was found in my early 30s. She still wanted to see me every 3 months to tell me to keep taking the Meloxicam and dismissed how my pain was slowly evolving and getting worse. It was odd because PAs aren't legally allowed to practice medicine independently in my state, but I never saw a doctor there and none of her notes reflect a doctor had looked at them. The one doctor that was left in that office ended up leaving a few months ago to start at one of the rheumatology offices my new rheumatologist had opened and I feel like she never knew I existed. So this PA was the only one left and I was told they wouldn't get a new rheumatologist till September.
I should have went elsewhere sooner, but sadly my doctor was leaning toward me having ehlers danlos and no rheumatologist would take me other than the one I'm seeing now. I do have hypermobility problems, but I felt that wasn't the only thing going on.
I hit my breaking point last month when these weird itchy patches showed up on my elbows and the bottom of my feet/heels were killing me. It was like my joint pain in my fingers and neck amplified 100x during that time too. She dismissed it and acted like it was nothing, even the swelling above the small toe was nothing. I requested an MRI of my right foot due to an X-ray saying it was possibly synovitis or a bone cyst, and it was pretty inconclusive, like they could see swelling but they couldn't figure out why. The radiologist said possible fibromatosis, but they also said it wasn't in the correct location and didn't really look like it (the swelling/lump on the side of my foot is soft, not hard), that I would need a clinical correlation. The PA-C took the word fibromatosis from the results and sent me a message telling me that's exactly what it was, that I didn't have inflammatory arthritis, and to keep taking the Meloxicam, which wouldn't help something like that anyway, this was before I even seen the results myself. My ANA was also positive and my inflammatory markers were elevated at the time, but I never received a call from that office about it.
At least my primary care doctor listens to me and she got me an appointment at a dermatology clinic for my elbows. Skin biopsy results haven't come back yet, but they felt it was psoriasis just by looking at it, they just wanted to make sure. She also got me an appointment for one of the best rheumatologists in Kentucky, which leads me to now. I saw the resident physician first and he asked me a lot of questions and looked me over, he also thought the patches looked like psoriasis. He spent a good 30 minutes with me before getting the rheumatologist. The rheumatologist walked in with both the resident and nurse practitioner, introduced himself, and said he was 90% sure I had PsA but wanted to do bloodwork to rule other stuff out, he actually ordered better bloodwork than that PA ever did. He even looked at my foot and said it definitely wasn't fibromatosis and that it was swelling from the joint in my small toe. You could feel the confidence dripping off this doctor, but he's one of the best for a reason and he's been in his field for years and has opened various offices around my state. There's at least a thousand great reviews about him and the only bad one was about how someone didn't like his personality, I found him to be fine.
He said you're allowed to have both fibromyalgia and PsA at the same time, but he felt my pain was more enthesitis pain than anything else, since he felt I didn't have the symptoms of fibromyalgia. He also said the worsening osteoarthritis in my SI joints and now in my facet joints can definitely be due to PsA, and it doesn't always show inflammation in the joints when checked.
I see his NP in two weeks and they're wanting to talk about biologic options, which I'm totally for. All the NSAID has done is mess up my stomach without helping much for my pain. I'm on Prednisone right now for an ear infection and all my joint pain is muted, this is the first time I've felt normal in along time.
Never stop advocating for yourself, I knew something felt off for awhile, but I didn't know what it was exactly.