Hello, everyone. 35M with Chiari 1 of “only” 3-4mm diagnosed at 17 years old with MRI due to headaches that later resolved. Subsequent scans in 2022 and 2024 revealed that the size has remained constant. Throughout the years, I literally forgot I had it due to a lack of symptoms and/or conflating the symptoms with Bipolar 1/ADHD and treatment side effects. In 2022, I had an onset of neuropathy with a job I took that had me bending over repeatedly. I remembered the Chiari at that time and got referred all the way to neurosurgery but was never able to go due to a move. Symptoms subsided again. I was on lithium, which I later learned increases ICP. I had jumpy vision (I described it as fast-forward vision) which was terrifying and for which I suspected mania, not knowing it has to do with Chiari. I had some photophobia that mostly occurred at night when seeing police lights and I assumed it was perhaps epileptiform activity, still knowing essentially nothing about Chiari. Went to a NUCCA chiropractor, at which point the photophobia became severe and permanent and I no longer drive, except on totally cloudy days, and even then with great difficulty. My symptom is silent headaches with immediate onset of dysphagia that goes away when I force myself to swallow and remove the trigger. It is still extremely debilitating and causes a panic attack basically every time because despite having never had a seizure except ECT, I still assume that that’s what’s going on and that I have to quickly to prevent it. When I finally got an EEG to try to rule out epileptiform activity it came back normal with no epileptiform activity, but admittedly, I was on a low dose of 300 mg of lithium (an anti-epileptic) because it seemed to help the headaches I was having at the time so I’d like to discuss whether that could’ve thrown the test with a medical provider.
I stay in dark rooms and get motion sick from the motion of tree shadows coming through the window (the intermittence of tree shadows and sunlight driving is my main photophobia trigger driving), screens in general, especially TV flashes on the walls. I’ve been unable to comply with CPAP therapy due to it making my wooishng tinnitus worse and me waking with a jerk right as I’m falling sleep, but I’m going to try harder to push through the waking reactions despite needing Seroquel nightly for sleep. I was already facing functional or total disability because of the Bipolar but now hopefully Chiari is some of the picture and I can regain some function. Phone calls, Zoom, especially speaker phone are difficult too. Because of pitch-dependent noise sensitivity. Car motors and other repetitive and high-pitched sounds are also instant triggers. At the peak, was having bad phonophobia with onset of panic and weakness that felt like a blood sugar crash when planes and big trucks would pass, and only after hearing them consciously after the initial reaction did I understand what was going on.
I’m coming to the end of a course of physical therapy (with an emphasis on longer-term posture correction) with dry needling that definitely helped, and the one night that I was able to sleep with the CPAP seem to clear up a lot of the headache symptoms and some of the photophobia as well. The sudden onset of the photophobia has me concerned and I don’t want it to be permanent or worsen and I’d like to drive again. Also off of all meds, including psych meds because everything seems to cause me this silent headache, which is basically overwhelm and worse, severe dissociation (Lithium and Depakote did this, to my recollection, though they initially helped pain when I had that and I only tried a crumb—as is now typical—of Topamax with the same result of severe dissociation and panic. Admittedly, my problems with these panic attacks started when I had too much cannabis one time without prior experience but now Chiari seems to be a complicating factor and it’s hard to know whether ICP and Chiari stuff or panic is at work in these reactions definitively, but I also tried Gabapentin recently and it didn’t cause dissociation just some calm with a reduction of muscle pain but an increase in Chiari symptoms on at least one occasion besides messing up the functioning of my sleep meds). I was adjusting my meds pretty frequently at one point and suspected them in the photophobia for a long time as well, but I’ve been off of all meds for probably four months now. I also have visual snow and nystagmus at night, when reading and I just catch it general when I’m outside—my eyes don’t know what to focus on and jump around and are taking longer to focus the last several days.
I’m trying to get a neurosurgery appointment with Dr. Judy Huang at John Hopkins, besides trying to get CPAP to work and I’m curious about mild traction. It seems to help me when done rightly, but I know there are conflicting reports here about it and that it’s pretty individualized. Sometimes when therapies I try seem to be going poorly, perhaps I quit it too soon, but sometimes I gaslight myself and tell myself to try harder and push through bad reactions. There’s only so much I can do about severe dissociation and panic attacks and no one around me gets it but thankfully, my providers are fairly understanding.
There’s definitely a strong positional component to symptoms. I’m normally intracranially hypertensive but tried Prilosec in two cases and a pinch of baking soda in water in others and they send things hypotensive, likely due to poor flow. Drinking water and using the restroom both seem to instantly affect pressure in head too so it seems to very much be Chiari. I don’t know my tolerance or the merits of trying other migraine medications and treatment, for example. Ibuprofen helps as has sipping caffeine, though it’s a mania trigger. I’ve also tried eye drops, glasses, biofeedback and neurofeedback for headaches as well as specialized glasses for light sensitivity and I think I’ve ruled out green light therapy with a dimmer at this point having tried it, but I understand there may be some more specialized eye exams to try. I know I have Chiari and had mild photophobia but then it got worse very quickly. Don’t know if adjusting meds or NUCCA adjustment or other traction, exercises or poor posture were to blame or this is just the progression of Chiari or the onset of a migraine component alongside all these symptoms above which are largely new. Differential diagnosis between Chiari and migraine seems to be a special challenge. CPAP and rolling my neck seemed to also help my debilitating OCD but lately rolling my neck has become irritating. I also have worsening brain fog which I forgot to mention until the very end.
Thanks for listening to the rant.
Please weigh in if it connects with your experience!
TL;DR Tried chiropractic, including NUCCA over the years and have since discontinued due to onset of photophobia after NUCCA. Did physical therapy with dry needling, tried soft collar, CPAP (still trying to get it to work—helped the one time I could sleep with it, biofeedback, neurofeedback, eyeglasses and eyedrops for photophobia which is my main concern for which I’m seeking consultation for surgery (it’s so bad, I often wear sunglasses indoors and have cover my eyes totally by hand—even stray light through a thick eye shade is an instant trigger) but what else should I try?

It’s been almost two years since I took Topamax at a dosage of 25 and 50 mg for a total of two weeks. Repeat: I was on this drug for two weeks only. Ever since I have had permanent word recall issues and general language problems. My memory is shot and I can no longer think or form ideas the way I used to. Add to that ataxia and coordination issues.
I’ve done EVERYTHING to try and find out what happened, and to try and reverse whatever did happen, and nothing! No answers from docs, no legitimate explanation, bunch of gaslighting nonsense. I’m 100% sure it was this drug.
I know I’m not alone with this. So, my question for y’all: WHY IS THERE NOT MORE OUTRAGE ABOUT THIS VERY SERIOUS ISSUE?!

Introduction
An excessive rise in blood sugar or glucose is known as "Diabetes Mellitus". The primary form of sugar in blood is blood glucose, which also serves as the body's primary energy source. In addition to being produced in the muscles and liver, glucose is obtained via diet. All of the body's cells receive glucose from the blood to utilize as fuel.
The hormone known as insulin, which transports glucose to every cell in the body, is released into the circulation by the pancreas, an organ situated between the stomach and the spine. When the pancreas produces insufficient insulin or insulin that is not functioning properly, glucose remains in the bloodstream instead of entering cells. Diabetes can be brought on by excessive blood glucose levels. Diabetes can affect people of any age or gender. Diabetes occurs in three basic types: Type 1, Type 2, and Gestational Diabetes.
Type 1 diabetes:
Although it can occur in adults as well, type 1 diabetes, often known as juvenile diabetes, primarily affects young people. Due to an immune system attack and subsequent destruction of the insulin-producing cells (pancreatic beta cells), type 1 diabetes results in insufficient or nonexistent insulin production. You won't get diabetes if you eat too much sugar, despite popular belief. The immune system of a person with Type 1 diabetes attacks the beta cells in their body, which produce insulin, which is how the disease began. Monogenic diabetes is the term for a subset of rare types of diabetes caused by mutations or alterations in a single gene. The two primary types of monogenic diabetes are Maturity-Onset Diabetes of the Young (MODY) and Neonatal Diabetes Mellitus (NDM).
Before the age of six months, diabetes is more likely to be non-diabetic diabetes mellitus (NDM) than autoimmune Type 1 Diabetes Mellitus (T1DM). MODY refers to a class of hereditary autosomal-dominant conditions characterized by early-onset, usually moderate hyperglycemia (high blood sugar). Rather than insulin resistance, it is the consequence of beta-cell malfunction. MODY is associated with mutations in a minimum of eight genes. There is an older group with the slower onset disease in addition to the typical young individuals with acute onset T1DM. They may appear to have Type 2 Diabetes Mellitus (T2DM) in middle age, but tests for the anti-glutamic acid decarboxylase (GAD) antibody show indications of autoimmunity. Eventually, they develop an insulin-dependent lifestyle. This condition is known as Adult Latent Autoimmune Diabetes (LADA).
Complications of diabetes
Complications from diabetes have been shown to significantly raise health care expenditures for both treating and managing the disease as well as increasing morbidity and mortality. Diabetic patients who have out-of-range diabetes treatment and higher long-term blood glucose levels are more likely to experience microvascular and macrovascular problems.
Blood glucose levels that are too high over time can lead to a number of problems, including:

• Diseases of the eyes caused by alterations in fluid levels, tissue edema, and injury to the blood vessels in the eyes
• Foot issues brought on by nerve damage and decreased blood flow to your foot
• Gum disease and other dental issues, as harmful bacteria are encouraged to proliferate in your mouth by a high blood sugar level in your saliva. Food particles and bacteria interact to create plaque, a soft, sticky film. Eating foods high in sugar or carbohydrate can also cause plaque. Certain kinds of plaque lead to foul breath and gum disease. Cavities and tooth decay are caused by other types.
• Damage to your blood vessels and the nerves that regulate your heart and blood vessels can result in heart disease and stroke.
• Renal disease brought on by harm to the kidneys' blood arteries. Diabetes frequently results in elevated blood pressure. That could also be bad for your kidneys.
• Damage to the nerves and the tiny blood arteries that supply your nerves with oxygen and nutrients might result in nerve issues (diabetic neuropathy).
• Nerve injury and decreased blood supply to the genitalia and bladder can lead to sexual and urinary issues.
• Disorders of the skin, some of which are brought on by modifications to the small blood vessels and poor circulation. It is also more common for people with diabetes to get infections, particularly skin infections.

Additionally, acute hyperglycemia emergencies can be brought on by high blood glucose levels. These emergencies consist of:

• The most common cause of ketoacidosis, a potentially fatal condition marked by hyperglycemia and elevated blood acid (ketone) levels, is type 1 diabetes.
• Hyperosmolarity is a condition that causes the body to lose water from its organs. It is marked by prolonged hyperglycemia without ketoacidosis and severe dehydration.

Management of diabetes
Type 1 diabetes is a complicated illness that needs to be managed on a daily basis with effort and preparation. Here are some tips to help you effectively manage your Type 1 diabetes:
Check your blood sugar frequently: Using a continuous glucose monitor (CGM) or a glucometer to check your blood sugar is essential for managing diabetes and avoiding complications. If nothing else, make an effort to monitor your blood sugar levels before bed and after meals. Treating high blood sugar as soon as feasible is crucial.
Regularly take your insulin and other medications: Pay attention to the directions provided by your healthcare practitioner when taking your insulin and any additional drugs, if any.
See your endocrinologist frequently: To ensure that your Type 1 diabetes treatment plan is effective, it's critical to see your endocrinologist frequently. Don't be hesitant to pose targeted queries to them.
See your eye doctor and all of your other providers on a regular basis. Complications from type 1 diabetes can affect many parts of your body, but particularly your eyes. It's crucial to visit your ophthalmologist (eye doctor) at least once a year so they can examine your eyes.
Plan ahead for a sick day: Consult your endocrinologist about self-care and managing your diabetes during illness. Diabetes-related ketoacidosis (DKA) can be brought on by illness, so it's critical to be prepared by knowing what to do if you become ill in advance.
Stay educated: Never be reluctant to inquire about Type 1 diabetes with your healthcare physician. Your chances of leading a healthy life and avoiding problems from Type 1 diabetes increase with your level of knowledge about the disease and how to manage it.
Find a community: Making online or in-person connections with other Type 1 diabetics can make you feel less isolated while managing your condition.
Ensure your emotional well-being: Compared to people without diabetes, people with diabetes have a two to three times higher risk of depression and a 20% higher chance of receiving an anxiety diagnosis. Having a chronic illness that needs ongoing care can be very demanding. In the event that you exhibit symptoms of depression, it is imperative that you consult a mental health expert.
Conclusion
Four daily actions can help blood glucose levels remain within the desired range:
I. Stick to a balanced diet.

1. Engage in physical activity.

III. Regulate the dosage of insulin.
IV. Monitor diabetes.
At first, these tasks could seem overwhelming. Make minor adjustments until completing these actions becomes a regular part of your day.
To prevent hypoglycemia, learn to balance your insulin dosage with each meal and physical activity. Establish a goal range for your blood sugar and raise your HbA1c (keep it between 6% and 7%). Take part in running events and diabetic camps to network with other Type 1 diabetics and gain insight from their experiences. Stay positive, do yoga, and meditate. People can resume their normal lives and no longer have to fear diabetic consequences once they have learnt how to manage their diabetes.

I don’t know if pounds are coming off because I’m not weighing yet but i am definitely looking leaner and have more energy so I’m walking more but my appetite is pretty much the same - I’m not a crazy eater but I weigh 165 and used to be 140 and this is from baby weight from a year ago I still can’t get off . But Topamax doesn’t really take away my appetite
To update my dosage is 125 and only been on it for about 6 weeks

Almost three weeks ago, I (29F) kept fighting with my rheumatologist about my excruciating daily pain and defeating fatigue. I had only seen her once via zoom, which was her preference to see me as a new patient. She urged me to drive the hour in to see her for a full physical to see if there was anything that could explain my pain. She had just repeated full autoimmune labs a few weeks prior, with a few elevated but told “non-specific enough”. At the appointment, I was told I wasn’t auto-immune, auto-inflammatory, or reason to be at the rheumatologists office but she would put in a STAT for my biopsy for the nerve count and to see the autonomic neurologist, because the appointment I booked is for next March. Today, I feel defeated as the biopsy results came back negative for small fiber neuropathy which my prior rheumatologist told me I fit all the signs for. So now I wait. The same day as the biopsy, I had my first appointment with my pain management specialist, and I felt for the first time in over two years I was listened to. He said I have hypermobility especially in my lower back, suspected carpal tunnel in both wrists. Ordered an MRI for my lumbar spine that day as well as physical therapy/aqua therapy and an EMG on upper and lower extremities. This past Saturday I had the MRI on my spine where they found a partially ruptured disc at L5/S1 that’s pushing into my spinal canal and osteoarthritis of my sacroiliac joint in my pelvis. I already had T4-5-6 discs from when I was 17 which have been reaggravated this week from my job.
I’m on four pain meds a day which I function fine on (cymbalta, topamax, gabapentin 600mg 2-3x/day, shit ton of Tylenol) but now my pain isn’t under control worse than before. My job is strenuous which I’m trying to find a different career path even though these silent illnesses have stolen now two jobs I love from me.
I feel defeated and don’t know what to do next. No one wants a diagnosis, but I’m tired of fighting with doctors that won’t listen

Copied from article (link below also):
“Despite decades of progress in cancer treatment, dosing remains stuck in the past and patients are likely suffering unnecessary treatment-related side effects, according to authors of a recent survey-based analysis.
Dosage recommendations on drug labels are still typically based on the maximum tolerated dose from phase 1 testing, a holdover from when chemotherapy was about the only thing medical oncologists had to offer patients.
Experts now question the more-is-better approach for chemotherapy as well as for targeted and immunotherapies where lower, less toxic doses often work as well as higher ones.
But with maximum tolerated dose still holding sway, many patients receive this dose when starting therapy and can experience significant treatment-related side effects.
The survey-based analysis, published in the Journal of Clinical Oncology, supported this view.
The survey, which asked patients with metastatic breast cancer about the toxicities associated with the maximum tolerated dose, found that nearly 90% of respondents reported at least one significant treatment-related side effect.
Overall, 1221 patients completed the 27-question survey, developed by the Patient-Centered Dosing Initiative (PCDI), a patient advocacy group launched in 2019 to improve treatment of metastatic breast cancer.
The survey aimed to assess the prevalence and severity of patients' treatment-related side effects, communication between patients and physicians about these issues, as well as perceptions about the efficacy of higher vs lower doses and a willingness to discuss different dosing strategies.
Patients were invited to take the survey on social media. Most patients were postmenopausal, and almost half had been diagnosed in the past 2 years. Treatments included targeted, endocrine, and chemotherapy, as well as radiation, surgery, and immunotherapy.
Overall, about 86% of patients (1051 of 1221) reported at least one significant treatment-related side effect. Among these patients, more than 20% went to the emergency room or hospital as a result, and 43.2% missed at least one cancer treatment.
The most common side effects were fatigue, nausea, low blood counts, diarrhea, and neuropathy.
Almost all respondents (97.6%) told their doctors about the treatment toxicities. More than half (54.2%) received a dose reduction to minimize the side effects, and among these patients, 82.6% reported symptom relief.
The analysis had several limitations, however, including possible selection bias because only patients with internet access could participate, an underrepresentation of minority populations, and self-reported side effects that could not be confirmed.
Still, the results indicate that patients are likely struggling with potentially unnecessary treatment-related side effects because of an outdated dosing paradigm, said investigators led by PCDI founder Anne Loeser, BS, who recently died of metastatic breast cancer.
The group continues to work with the US Food and Drug Administration on initiatives to optimize cancer drug dosing and update labels. But in the meantime, PCDI recommends talking with patients about dosing options. The survey indicated that such conversations are welcome.
Nearly all survey respondents (92.3%) said they would be willing to discuss alternative dosing options to optimize quality of life. One in five, however, did not know that dose reductions were an option to control side effects. And more than half of respondents (53.3%) did not think the highest dose was necessarily the most effective.
There are "no real surprises" in the survey, but "clearly patients want to be engaged in decision-making," said William J. Gradishar, MD, a breast oncologist at Northwestern University, Chicago, who discussed the initial survey results when Loeser presented them in 2021 at the American Society of Clinical Oncology annual meeting. The survey "really highlights the need for a two-way conversation" between patients and caregivers throughout treatment.
"We have to recognize that many of our treatments do not actually improve survival, and if they do, in some cases, it's quite modest, so anything we can do to make therapy more tolerable is important," especially when the goal of care is palliation, not cure, said Gradishar.
No funding was reported for the work. Loeser and Gradishar did not have any disclosures.”
https://www.medscape.com/viewarticle/more-not-always-better-outdated-drug-dose-strategy-breast-2024a10008xa

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.

INTRODUCTION Bartonella is a genus of bacteria that includes several different species. Bartonella henselae (the best known) is one of those specific species within the Bartonella genus. But it is not the only one, there are more, BARTONELLA KOEHLERAE that causes neurological problems such as muscle spasms, stomach cramps, stiffness in the hands, which I will talk about later in in documented cases.
BARTONELLA VINSONII BERKHOFFIII It has been suggested that this bacteria may be associated with peripheral neuropathy, meningitis, encephalitis and in rare cases Guillain-Barré syndrome.
BARTONELLA AND ITS VARIANTS.
BARTONELLA HENSELAO (BARTONELLOSIS):
BARTONELLA HENSELAO can be transmitted to humans through:
-Scratches or bites from infected cats.
-Contact with the saliva or secretions of infected cats.
-Infected flea bites.
-Blood transfusion.
Fleas can transmit other diseases such as bartonellosis, caused by the bacteria Bartonella henselae, which can cause symptoms similar to Lyme disease, such as fever, fatigue, and muscle aches. Bartonellosis, caused by the bacteria Bartonella henselae, is generally not associated with long-term neurological problems like Lyme disease. While Lyme disease can cause neurological complications, such as peripheral neuropathy, meningitis or encephalitis, bartonellosis tends to produce milder, more localized symptoms. However, in rare and severe cases of bartonellosis, especially in people with compromised immune systems, neurological complications such as encephalitis or inflammation of the brain have been reported. But in general, serious neurological complications are much more common in Lyme disease than in bartonellosis. We cannot completely rule out the possibility that bartonellosis is related to fasciculations or other neurological problems, as any bacterial infection has the potential to cause neurological symptoms in certain cases. If bartonellosis is not treated properly, serious complications can arise, especially in people with weakened immune systems or those who have a more severe infection. -Cardiac complications, such as endocarditis (infection of the inner lining of the heart) in severe cases. -Severe illness in people with compromised immune systems, such as those with HIV/AIDS or who are receiving immunosuppressive treatment. -Ocular complications, such as uveitis (inflammation of the uveal tract of the eye) or neuroretinitis (inflammation of the retina and optic nerve). -Central nervous system involvement in rare and severe cases, including encephalitis (inflammation of the brain) or meningitis (inflammation of the membranes surrounding the brain and spinal cord). In rare cases where bartonellosis affects the nervous system, various neurological problems can occur in the short, medium and long term. Some of these problems may include: -Peripheral neuropathy: Damage to the peripheral nerves that can cause symptoms such as numbness, tingling, muscle weakness, and pain in the extremities. -Meningitis: Inflammation of the membranes surrounding the brain and spinal cord, which can cause symptoms such as severe headache, stiff neck, fever, and sensitivity to light. -Encephalitis: Inflammation of the brain that can cause serious symptoms, such as confusion, altered mental status, seizures, muscle weakness, and coordination problems. -Guillain-Barré syndrome (GBS): In some rare cases, bartonellosis can trigger Guillain-Barré syndrome, an autoimmune disease that affects peripheral nerves and can cause progressive muscle weakness, paralysis and even life-threatening breathing problems. It is important to note that these neurological problems are rare in cases of bartonellosis and that most people recover completely with appropriate antibiotic treatment. It is possible, although rare, that in rare cases flea-borne bartonellosis may cause neurological problems such as peripheral neuropathy. Peripheral neuropathy is damage to the peripheral nerves that can cause symptoms such as numbness, tingling, muscle weakness, and pain in the extremities. BARTONELLA KOEHLERAE:
Bartonella koehlerae can be transmitted to humans through:
-Infected flea bites.
-Scratches or bites from infected cats.
-Blood transfusion.
Now, in the studies that I have analyzed, I have found that the Bartonella genus has species or variants, such as Bartonella koehlerae or Bartonella vinsonii berkhoffii, that can cause neurological problems. The scientific article highlights that Bartonella is a vector-borne zoonotic disease with worldwide distribution that can infect humans and a wide variety of mammals, including small pets such as cats and dogs. https://journals.asm.org/doi/full/10.1128/jcm.00833-11 It is mentioned that in recent years there has been an increase in studies on Bartonella infections in various parts of the world, although most publications have focused on the North American perspective. Additionally, information is provided on clinically relevant Bartonella species in cats and dogs, as well as their primary reservoirs, incidental hosts, and confirmed or suspected vectors. Several Bartonella species, such as B. clarridgeiae, B. elizabethae, B. henselae, B. koehlerae, B. quintana, B. rochalimae, and B. vinsonii berkhoffii, are reported to be associated with serious disease in cats and dogs, and all They have zoonotic potential. The diversity of Bartonella species is addressed and the clinical manifestations they can cause in cats, dogs and humans are discussed, including intermittent fever, granulomatous inflammation in different organs, endocarditis, bacillary angiomatosis, peliosis hepatis, uveitis and vasoproliferative tumors. The importance of research to confirm or rule out Bartonella infection as a cause of various diseases in cats and dogs is emphasized. It is mentioned that several species of Bartonella have the ability to infect humans, cats and dogs, and that transmission can occur through a variety of vectors, such as fleas, ticks and lice. Additionally, the role of cats as major reservoirs of B. henselae, the causal agent of cat scratch disease in humans, is discussed. It is noted that cats may also be reservoirs for other Bartonella species, such as B. clarridgeiae and B. koehlerae, although their role in the epidemiology of these species is not completely established. CASE: Hallucinations, Sensory Neuropathy, and Peripheral Visual Deficits in a Young Woman Infected with Bartonella koehlerae MUSCLE SPASMS, ANXIETY, STIFFNESS IN THE HANDS; BARTONELLA KOEHLERAE
“Abstract A young woman experiencing depression, anxiety, mood swings, severe headaches, muscle spasms, interphalangeal joint stiffness, decreased peripheral vision, diminished tactile sensation, and hallucinations was persistently Bartonella koehlerae seroreactive and bacteremic. Following antibiotic treatment, B. koehlerae antibodies and DNA were not detected and all symptoms resolved. An 18-year-old female was sequentially examined by a neurologist, psychiatrist, neuro-ophthalmologist, and infectious disease physician because of a 4-year history of slowly progressive neurological and neurocognitive abnormalities. Biopsy-proven celiac disease was diagnosed in December 2004, following complaints of frequent stomach cramps. Despite dietary control of gastrointestinal symptoms, she developed intermittent joint pain, primarily involving the ankles. During 2005, the patient reported reduced tactile sensation in her hands and by 2007 frequent severe headaches, back pain, generalized muscle spasms, and an inability to extend her fingers due to stiffness in her proximal and distal interphalangeal joints. “ American Society for Microbiology https://journals.asm.org/doi/full/10.1128/jcm.00833-11 With this case we can definitively verify that Bartonella and its variants can cause neurological problems. In this case, B. koehlerae and This bacteria can be commonly found in fleas that infest cats, so transmission through the bites of infected fleas is a possible route. Also at the same time, the girl's case proves that not even neurologists, psychiatrists, neuro-ophthalmologists, and infectious disease physicians can't understand what is really happening, and they only throw it into the bucket of "anxiety."
“The patient's psychiatrist addressed her anxiety with cognitive behavioral therapy and prescribed oxcarbazepine (300 mg twice daily) and quetiapine fumarate (300 mg in the evening), which reduced hallucination frequency to less than once daily.” It is possible for humans to become infected with Bartonella koehlerae through the bites of infected cat fleas. Fleas are common vectors for transmitting bacteria of the Bartonella genus, including Bartonella koehlerae. Table 2 presents clinical-epidemiological studies on Bartonella spp. involving cats in Europe. For example, it is shown that in Italy, studies have been carried out in different regions, such as Tuscany, Sicily, Sardinia and the Aeolian Islands, with variations in the prevalence of Bartonella spp. among the cats studied. Furthermore, it is observed that in Spain, several studies have been carried out in different areas such as Barcelona, Madrid and Rioja, with a wide range of prevalences of Bartonella spp. in cats. https://www.ncbi.nlm.nih.gov/pmc/articles/PMC6280416/#CR24 Table 4 shows the global distribution of Bartonella spp. in cats and highlight the importance of understanding the epidemiology of these infections in different regions of the world. https://www.ncbi.nlm.nih.gov/pmc/articles/PMC6280416/#CR24 Bartonella exposure or infection in cats has been widely studied throughout the world, as seen in the tables provided. “The annual number of human cases of CSD in the USA is estimated to be 12,000 outpatients and 500 inpatients [101].” https://www.ncbi.nlm.nih.gov/pmc/articles/PMC5038427/ Currently, dogs appear to be incidental hosts rather than reservoir hosts for B. henselae, supported by the fact that this is the most frequently documented Bartonella species detected in sick dogs [128]. CASE TREATMENT. “With repeated PCR documentation of B. koehlerae bacteremia, the patient was treated with rifampin (300 mg twice daily) and azithromycin (250 mg/day) for an additional 4 months. Following this treatment regimen, her hallucinations stopped completely, and normal peripheral vision was confirmed by visual field perimetry in November 2010. The quetiapine fumarate dosage was gradually decreased, and hallucinations and dissociative episodes have not returned. B. koehlerae antibodies were not detected in August and September 2010 and January and March 2011 (Table 1). With the exception of a single 7-day BAPGM enrichment culture PCR result (January 2011), for which the amplicon could not be successfully sequenced, Bartonella sp. DNA was not amplified from blood, serum, or enrichment blood cultures (n = 31 independent PCRs) following the 4-month treatment regimen. During the 9-month posttreatment follow-up period, the patient has experienced no hallucinations, peripheral vision has remained normal, and tactile sensation has improved substantially. Family members reported that the patient was much improved and had returned to her preinfection baseline, both neurologically and psychiatrically.” https://journals.asm.org/doi/full/10.1128/jcm.00833-11 BARTONELLA VINSONII BERKHOFFII
B. vinsonii subsp. berkhoffii has been associated with neurological problems in humans and animals. Like other Bartonella species, this bacteria can cause a variety of neurological symptoms in cases of infection. Some of these symptoms may include peripheral neuropathy, meningitis, encephalitis, and Guillain-Barré syndrome. Bartonella vinsonii berkhoffii can be transmitted to humans through:
-Bites or scratches from infected animals.
-Blood transfusion
-Infected tick bites.
-(It has been suggested that fleas could potentially act as transmission vectors for Bartonella vinsonii berkhoffii, fleas are known vectors for the transmission of bacteria of the Bartonella genus. However, as research into the transmission of Bartonella vinsonii berkhoffii is still ongoing, More study is needed to fully understand the role of fleas in transmitting this specific bacteria.)
CASE: Bartonella vinsonii subsp. berkhoffii and Bartonella henselae bacteremia in a father and daughter with neurological disease
Symptoms included progressive weight loss, muscle weakness, lack of coordination (the father) and headaches, muscle pain and insomnia (the daughter). "The father was a 50-year-old veterinarian whose symptoms began in 2006 with arthralgias and fatigue, which progressively worsened over the next 18 months. He described joint, muscle, and neck pain and stiffness that was most severe in the morning but improved throughout the day."
"The above patient's 7½-year-old daughter first sought medical attention for a similar constellation of symptoms in October 2007. Her illness began suddenly one morning with severe neck pain. Over the next month, the pain gradually improved, but it never completely subsided, and she also developed headaches, low-grade fevers, and general malaise. Her symptoms evolved to include intermittent weakness of her legs and paresthesias, which were so debilitating that she could no longer attend school."
Conclusions of the case:
B. vinsonii subsp. berkhoffii and B. henselae are zoonotic pathogens that can be isolated from the blood of immunocompetent relatives with arthralgia, fatigue, and neurological symptoms. The therapeutic elimination of Bartonella spp. can be challenging, and follow-up testing is recommended. An increasing number of arthropod vectors, such as biting flies, fleas, keds, lice, sandflies, and ticks, have been confirmed or suspected to be the primary mode of transmission of Bartonella species among animal populations and may also be a potential source of infection. risk to humans.
SUMMARY Bartonellosis, caused by the bacteria Bartonella henselae and transmitted by fleas, can cause symptoms similar to Lyme disease, such as fever, fatigue, and muscle aches. Although bartonellosis usually does not cause serious neurological problems, in rare and severe cases, especially in people with compromised immune systems, complications such as encephalitis or inflammation of the brain can arise. Additionally, Bartonella variants such as Bartonella koehlerae can cause neurological problems such as depression, anxiety, muscle spasms, and hand stiffness. These cases can be difficult to diagnose and are often misinterpreted as psychiatric disorders due to a lack of awareness about the relationship between Bartonella infection and neurological symptoms. Cats are primary hosts of Bartonella henselae and other Bartonella species, and fleas that infest cats can transmit these bacteria to humans through bites. Additionally, dogs can be accidental hosts of Bartonella, although less commonly than cats. Treatment of bartonellosis and its variants generally involves the use of specific antibiotics, such as rifampicin and azithromycin, and can lead to significant improvement in neurological symptoms when administered appropriately. It is crucial that doctors consider the possibility of Bartonella infection in patients with unexplained neurological symptoms, especially if they have had exposure to fleas or cats. MY COMMENT We can make it clear that anything that can touch the nervous system will cause permanent or temporary damage, even very long-lasting. We can also see that doctors, like the neurologist, acted without knowing what the patient had, always giving the diagnosis of anxiety.
https://parasitesandvectors.biomedcentral.com/articles/10.1186/1756-3305-3-29 https://journals.asm.org/doi/full/10.1128/jcm.00833-11 https://www.ncbi.nlm.nih.gov/pmc/articles/PMC6280416/#CR24 https://pubmed.ncbi.nlm.nih.gov/30368695/

Introduction
Type1 diabetes is a chronic condition in which the body is unable to produce insulin, regulates blood sugar levels. It is also called insulin dependent diabetes or juvenile diabetes.
Type 1 diabetes is an autoimmune disease, when the body immune system attacks the cells in the body. In type 1 diabetes, the immune system attacks and destroys the insulin producing beta cells in the pancreas.
About 5–10% of people with type 1 diabetes, which is less common than type 2 diabetes.

Complications of Type 1 diabetes
Complications of type 1 diabetes can affect other organs in the body by leading it to short-term and long-term health issues. Some of the common complications that include are:
Diabetic ketoacidosis (DKA): In this condition, the high blood sugar levels are due to lack of insulin. The cells in the body don't take up sugars in blood for energy production, so the body produces ketones for energy as an alternative. DKA requires immediate attention. It can be life-threatening if untreated.
Hypoglycemia (Low blood sugar levels): It may occur due to excessive insulin in the blood caused when individuals don't have sufficient food or are involved in intense physical activity without adjusting insulin dosage intake. Hypoglycemia symptoms are shakiness, sweating, confusion, dizziness, and loss of consciousness or seizures.
Long-term complications: High blood sugar levels for prolonged periods can damage blood vessels and organs. It can lead to various long-term complications that include:

• Cardiovascular disease: Type 1 diabetes increases the risk of heart disease like coronary artery disease, heart attack, and stroke.
• Kidney disease (nephropathy): High blood sugar levels can damage the kidney blood vessels. It can lead to kidney damage or failure.
• Eye disease (retinopathy): Type 1 diabetes can cause damage to the blood vessels in the retina. It can result in diabetic retinopathy. It can cause blindness in adults.
• Nerve damage (neuropathy): Type 1 diabetes can damage the nerves throughout the body, leading to numbness, tingling, pain, and loss of sensation in the feet and hands.
• Foot conditions: Nerve damage and poor blood circulation can increase the risk of foot problems such as ulcers, infections, and even amputation in severe cases.
• Skin conditions: Individuals with type 1 diabetes are more prone to skin conditions such as bacterial and fungal infections. The slow wound healing is commonly seen in type 1 diabetes.

Mental health issues: Individuals with type 1 diabetes can affect mental health by leading to increased stress, anxiety, depression, and eating disorders.
Pregnancy complications: Pregnant women with type 1 diabetes are at high risk of pre-eclampsia, gestational diabetes, miscarriage, and birth defects. Proper care and management of blood sugar levels to reduce the risk of complications during pregnancy.
Other complications: Type 1 diabetes can increase the risk of other complications such as dental problems, gastroparesis (delayed stomach emptying), and sexual dysfunction.
Prevention of Type 1 diabetes complications
Proper treatment and management of type 1 diabetes through insulin therapy, blood sugar monitoring, a healthy diet, regular exercise, and medical care for preventing the risk of its complications. Regular check-ups with doctors and treatment are important for managing type 1 diabetes.

Conclusion
Type 1 diabetes represents unique challenges and factors for consideration in patients and their healthcare providers. In type 1 diabetes, it can be improved and low the risk of complications by early detection and management strategies. It is essential to promote care not only about physical health but also emotional and psychological health in type 1 diabetes individuals.

I started candesartan last week Tuesday, 2mg and I'm to add 2mg every two weeks until I find a nice dosage that helps (or until 3 months is up, then I can try something else if needed). So for now, I can't say I feel much on the candesartan apart from the near fainting I've experienced, but I had that with topamax so whatever, right?
But my neuro also gave me frovatriptan. I've tried sumatriptan, rizatriptan, and naratriptan, and none were helpful at all. I got some telltale feelings yesterday, popped my first frovatriptan and waited. Within 2 hours I felt better than I've felt in months. I didn't even realise I could feel THIS good?? It's now been 28 hours since I took that frovatriptan and I haven't gone backwards at all? Usually, if the triptan even helped at all, I had the odd occasion of feeling good until I fall asleep and then I feel worse. That hasn't happened this time and I'm in awe.
Also, for a little extra info, my menstrual migraines are always the worst ones for me. Lasting 5-7 days, more painful than my other migraines, more symptoms, the works. My neuro told me to take 2 frovatriptans every day (one morning one night) for the 2 days before my period and for the first 3 days of my period. He says that if we control my menstrual migraines, I might find the other ones slow down because my body isn't so battered and bruised and exhausted and sensitive anymore. I still have 3 weeks before my next period so no update on how that fares just yet.

👋 Incredible people of this group,
I wanted to first Thank you all for sharing your experiences and insights. I'm sure the emotional support you all are providing is giving hope to the victims of the FQ evil to see light at the end of the tunnel.
Intro: I'm a newbie [37m and Type 2 diabetic] here, floxed this past week. I wasn't aware of this class of antibiotics called FQs 10 days ago, until I was prescribed Cipro 500mg for 10 days, twice daily, for my infection. I wasn't told about the side effects either by the doctor or the pharmacist. I naively started taking Cipro, blindly trusting the system. I never had any medication related side effects prior, and probably that over confidence played a role in me not doing due diligence before starting this monster medicine.
Story: Day 1: No noticeable symptoms
Day 2: Played pickleball for an hour or so in the afternoon. Woke up in the middle of the night due to a severe pain in my left thigh. Never had this experience before. I quickly fell back asleep without any issues.
Day 3: Leg pain from the previous night didn't seem like a thing. May have felt mild pain in the legs later in the day, but still didn't suspect a thing on Cipro. Noticed an eczema (little bigger in size than a quarter) like rash on my forehead later in the evening. Was surprised to see this since I never had this type of a rash. Thoughts quickly transitioned to Cipro. Yet, I didn't act.
Day 4: Played pickleball for an hour again in the afternoon inspite of minor body aches. The aches weren't too bad to warrant me to not play.
Day 5: Started having pain in both feet. This was new. I usually have pain in the entire arms & legs when I do sports after a long time, but not this type of heel pain. I couldn't walk beyond 10-15 mins in the evening. I easily walk 10k steps on a given typical day. This is when I started suspecting Cipro and a quick Googling revealed FDA's black box warning, tendon ruptures etc., I started getting concerned and decided to visit Urgent care the next day.
Day 6: My dumbass unwillingly took one more Cipro in the morning and visited Urgent care in the afternoon. Doctor said they were glad I showed up and advised me to stop Cipro right away, alongside mentioning how Cipro can have serious side affects.
Today is day 10 after my first dose and I'm going through one hell of a roller coaster since the above Urgent Care visit. Every day seems to bring a new set of symptoms. I'm having tendons popping all over my body, difficulty walking, numbness/weakness in the arms and legs, dry mouth ( due to anxiety?), shock/jolts in the head waking me up from the sleep (on two different occasions), extreme anxiety/fear, jaw pain today, cold feet, tingling in toes/fingers etc.,
I haven't started any supplements yet. I'm already a bit careful about my diet given I'm a diabetic. I'm planning to discuss the supplements mentioned in this sub with my doctor and get started with them soon.
I have neurology and rheumatology visits in the coming weeks, to get a sense of how much damage has been done already. Not even sure if there's a way to assess nerve damages?
I know no one has a crystal ball, but given my seemingly high dosage of Cipro (500mg 11pills) and given both the tendonitis and neuropathy related symptoms I'm having:
1) Am I looking at months/years of recovery, if any at all for certain? Are there cases of quick recovery inspite of high dosage? I know this may not be a sensitive question, but I'm only asking out of desperation to get some hope. 2) I'm able to do my daily routines including grocery shopping etc., slowly as of now inspite of the arms/legs pain. Will I rupture my tendons if I continue these, given im not taking bed rest? 3) Can I do anything to proactively prevent permanent nerve damage that some folks are alluding to in this sub?
Sorry for the long post.
Thanks in advance 🙏

I (30yo male) have been suffering from chronic illness for coming up a year, the past few months I’ve been bedbound and had a myriad of tests done, most of which have been clear other than low folate, pancreatic insufficiency (likely related to my celiac disease) and being diagnosed with postural tachycardia. For months is was labelled as somatic or anxious, mostly by ED doctors, leading to delayed treatment and investigation.
My symptoms are complex but the most debilitating are

• constant dizziness and occasional vertigo
• Ataxia
• Fainting episodes
• Severe fatigue
• widespread body pains(nerves, joints and muscles)
• Consant sinus pressure and pain
• 24/7 headaches and migraines
• digestive issues, appetite loss and stomach pain
• Tachycardia in line with POTS
• severe nausea, especially in the morning
• Rapid weight loss (10kg with 6-7 months)
• constant tinnitus
• ear pain
• paresthesia
• neuropathy
• Red goosebumps like rash all over legs, especially thighs and knees
• Chills with sweats
• confusion, brain fog and memory loss - muscle weakness, especially in my limbs, back and hands and predominantly on the right side.
• recurring visual issues, particularly blurring, double vision, black spots and halos.
• Bubbling sensations under the skin, usually around neck, legs and head
• Personality and mood changes
• Potential clonic and focal seizures (my doctor wants to trial me on gabapentin)

Recently I saw a private ENT surgeon due to ongoing sinus and facial pain who suggested I may have a form of ANCA vasculitis due to positive ANA and ANCA (something missed by my GP) test results, along with the symptoms.
Since then based on the advice of a GP I’ve started taking 40mg per day of prednisone until I can see a rheumatologist, which may take months.
My doctor has now suggested a brain and neck MRI with contrast which I have to self fund due to the public waiting list being a nearly 12 month wait.
My biggest concern currently is if it is the correct avenue as my research online suggests that a procedure known as an MRA may be more suitable for what they are looking for, my GP isn’t familiar with rare autoimmune conditions so I am wondering if the MRI is going to be a waste of time and money.
I have four questions -

1. Should I continue with the MRI or postpone it until I can find out more about how about one would get an MRA?
   
2. Would a contrast MRI show any abnormalities should ANCA vasculitis be present in the CNS?
   
3. Should I wait until I see a rheumatologist before going ahead with any type of scan?
   
4. Will the relatively low dosage of prednisone risk masking any potential issues? I’ve been on them for just over a week.
   

In the past 6 months I’ve had two clear CT brain scans without contrast, only showing signs of inflammation within my sinuses, I saw a neurologist too who put my symptoms down to “stress” and refused any follow ups, however the ENT said the recent ANA and ANCA positive results were of concern and said I should be reevaluated by a neurologist again.
It’s been a very challenging time for me and I’m rendered bed bound without the ability to much other than stare at the ceiling or sleep, and getting answers from specialists has been a rollercoaster.
Other conditions I was suggested at having in recent months were;

• Connective tissue disease (eg.EDS)
• Fibromyalgia
• Chronic fatigue syndrome
• Refractory celiac disease
• Various forms of cancer (I had a clear ct colonoscopy, chest X-ray and ct angiogram a couple months back)
• Thyroid issues

I am on the waiting list to see the following specialists,

• Cardiologist
• Gastroenterologist
• Rheumatologist
• Vestibular physio
• Pain specialist
• Eye specialist
• Rereferred to neurology

Sorry for the long read, I greatly appreciate any input or advice as the MRI will cost more than I can really afford after dealing with my illness for so long and being declared disabled and relying on benefits.

I hope it's okay if I link my health situation from another subreddit that goes into great detail about my health issues. Thank you, I appreciate people here taking the time to look, as it goes into everything. https://www.reddit.com/ChronicPain/comments/1c3cx4a/hi_i_believe_i_may_have_had_some_sort_of_chronic/
I have been seeing a neurologist since 2021 for my sudden onset neurological issues and have been trying to get treatment/a diagnosis for it. I have done many tests for this neurologist over the past 3 years, and now he wants me to find a different neurologist for a second opinion. He offered no advice for my issues, and no real sympathy that he wasn't able to figure out what's going on. Just sent me on my way.
I decided to look up this neurologist online last night just to see if there's new reviews about him, and it seems that he had been successfully sued for malpractice back in December 2022, in Georgia, not where I live/see him in person (I live in New England). The payout was about 150,000 dollars, again, in Georgia, not where I live. I believe this neurologist does telehealth neurology for states outside of where I live, which is what he was sued over, and I can't find the reason for the lawsuit online, and there's no board disciplinary actions I can find either. This worries me greatly, as I feel that I've been seeing a neurologist that didn't do as much as he could have to solve my health problems, which seem possibly permanent at this point. I was only given a very low dosage of 100mg gabapentin 3 times a day in early 2022 which did nothing for my nerve issues, which seemed to be caused by inflammation in my body, which is why I wanted a lumbar puncture/spinal tap.
The worst part of it is, he's the neurologist that's seen me the most and done the most testing! The first neurologist I ever saw (Also sued for malpractice in the 1990s/2000s, which is just wonderful) saw me once, dismissed my symptoms, and told me to "wait it out" and see what happens. I then went to this neurologist (The one I'm referring to in the title of this post), who did a EMG/NCV of my arm about a month into seeing him to rule out (I'm guessing) large fiber neuropathy, autoimmune blood work testing, glucose testing, and a referral to a rheumatologist, MRA/MRI/EEG scans, and a referral to a spine specialist as well as to a surgery practice to get a biopsy for small fiber neuropathy, which hasn't been done yet, but that's not his fault to be fair. It's a fair amount of testing, but the issues I was having, he didn't offer any advice to them, and only prescribed very low dose gabapentin and vitamins/supplements over real medications. His staff could be very rude, and he was distant and glossed over your issues. Reviews online say the same exact thing.
According to his medical records from within the past few months, he believes I have small fiber neuropathy (a form of nerve damage) and some sort of a cognitive disorder, which I'm meant to do hours long neuropsych testing for later this month. I had asked this neurologist years ago for a spinal tap, as my issues felt inflammatory in nature and a spinal tap I believe can rule out inflammation high enough to cause damage to the nerves going on in the central nervous system along with other disorders. He didn't give me any medications for inflammation to see if it helped, not NSAIDs or corticosteroids or anything. I also had two brain MRIs showing possible idiopathic intracranial hypertension. He did not consider a spinal tap for my symptoms, I am still dealing with daily physical and cognitive issues years since this first occurred. The inflammation that I felt in my body no longer exists, but nerve issues remain, and it feels that could have been prevented if anti-inflammatories were tried.
I would also like to add that the only reason I know he believes I have small fiber neuropathy is because other doctors have said his records say that. He's never said it to me himself. He has absolutely no communication skills. He's basically never given me an actual diagnosis for my issues directly, only through other people have I found out he believes I have small fiber neuropathy.
The nerve damage affects my face on the left side and groin/genital area (guessing the pudendal nerve) for unknown reasons, and the neurologist I've seen has offered no advice for it. Like I mentioned earlier in this post, he did an EMG/NCV of my left arm in 2021 which was clean for nerve damage, but when I asked if it would diagnose if I had nerve damage in my face, he said no, so I'm not sure why it was done. The nerve issues have gotten about 80% better in my face, and maybe 60% better in my genital area, but I have ED issues now.
I saw a third neurologist last year in the summer for a second opinion (I was trying to switch to a new neurologist, I was proactive) who also just saw me once like the first neurologist I saw and told me verbatim "I don't know what's causing your symptoms" and left it at that. It's not great that the person sued for malpractice while I was seeing him was the only one willing to do testing on me. It's just scary and very unfortunate.
I am currently going to see a fourth neurologist, who lives closer to me and hopefully can help my issues. A lot of my issues seemed inflammatory/autoimmune-like in nature (As I describe in the link to another subreddit above), but I was never prescribed NSAIDS or corticosteroids or anything like that. Just 100mg of Gabapentin 3 times a day I think like two years ago, as I mentioned before.
I feel like I have nerve damage in strange areas (face/groin area) that is permanent due to not being treated, but I don't know how you even treat it. I did try getting second opinions and tried getting answers from other doctors, so what am I supposed to feel here? Most of the doctors in my state don't get great reviews. I'm about 85% recovered from whatever caused this to me, but the fact it's not due to any treatment from a neurologist or other specialist, meaning it's like I never even saw them in the first place, feels very traumatizing, on top of the fact my long time neurologist has been sued successfully while I was seeing them.
If anybody here has support of advice I'd appreciate it, this was really upsetting to find out, I think anybody can understand where I'm coming from. I'd like to know if it seems he's done what he should be doing regarding the nerve issues.

My husband was prescribed Gabapentin for the first time a LONG time ago, approximately 2004. He started at a fairly normal dose of 300mg x 3 a day. He also takes tramadol 50mg for breakthrough pain. He is diagnosed with neuropathy in his feet and has been tested for diabetes 100 times and is NOT diabetic. He is also a very logical, straight laced guy with zero addiction issues. (I have all kinds of addiction issues, mental health concerns, etc but he's pretty "normal" outside of this diagnosis.) The symptoms of his neuropathy are isolated to his feet and legs, with chronic pain, pins and needles/parasthesia, aching, inability to feel temperature changes or most stimuli like a needle or pin, but also extremely painful when lightly touched by a feather or light bedsheet. He kicks and moves his legs and feet nonstop in his sleep and when awake, and despite trying many drugs from opiates to Lyrica, to Cymbalta, to countless others, he claims to get zero relief from anything except Gabapentin.
By 2010 his doctors were prescribing 800mg of Gabapentin x 3 doses per day, equaling 2.4 GRAMS of Gabapentin per day. By 2012 they had again increased the dosage to THREE 800mg Gabapentin per dose x 3 doses per day. Yes, you read that right. That's 2400mg per dose multiplied by 3 doses per day, equaling 7200mg or 7.2GRAMS of Gabapentin per day. Over time pharmacists refused to fill this Rx despite doctor's verifications, and he has been forced to change pharmacies multiple times due to this. Our health insurance company (we're in the USA) also decided at some point that they needed more documentation from the doc to continue covering this highly suspect Rx, which the doctor did gladly. Not long after that however, our insurance company finally started refusing to pay for the Rx. For years now my husband gets his Rx filled at a pharmacy where he has explained his situation to the head pharmacist and we pay out of pocket now.
Recently, in the last year or more, he has been experiencing very drastic personality and general health changes. He has become very depressed, paranoid, overly concerned with things that cannot be changed like interest rates and elections, much less interested in maintaining relationships with his family, friends, even intimate relationships, isolated, not finding any joy in life, not caring about home repairs and projects that he once cares about, and anger and resentment over things that happened decades ago. These changes have been sudden, out of nowhere, and DRASTIC. I'm worried about him. I'm concerned that this level of Gabapentin, although an amazing, miracle drug with little to no overdose risk, may be taking its toll on him and idk what to do. He's seeing a therapist now. He has started an antidepressant, but nothing has worked yet. I get the impression that he has no desire to "get better" and he is completely resistant to reducing his dosage of gabapentin or trying other medications. I believe that he's so afraid of the pain going back to the level before he found Gabapentin that he's simply unwilling to even explore other options.
Does anyone have any experience at these dosages? Does anyone know what the adverse effects are with long term overuse? I'm scared for him and I need feedback and advice. If you have any experience with anything similar to this scenario please reply here or private message. Thank you!! ♥️

A new supplement, PhytAge Labs Nerve Control 911™ Nerve Calming Formula, promises to help with nerve damage by supporting a healthy neural path. Let's discuss in detail how Nerve Control 911 works.
What is Nerve Control 911?
Nerve Control 911 is an advanced nerve support formula. This dietary supplement consists of all-natural ingredients that have been sourced of high quality.
The ingredients present in the formula are 100% natural and backed by years of clinical research.
You can rest assured that the formula is free from toxic and harmful chemicals that may produce side effects.
Neuropathy is a debilitating condition that takes away our freedom and causes a restriction in our movement, pain, and tingling sensations, and affects our ability to perform day-to-day activities.
Several health conditions, such as inflammation, diabetes, and much more, may cause neuropathy.
The body consists of several mechanisms and enzymes that disrupt your neural networks and cause the pain pathways to become overactive.
The Nerve Control 911 formula helps by blocking all the pain pathways that cause sharp pains in the body, as well as providing calming effects using the right combination of ingredients.
It has been recommended to take 2 capsules of Nerve Control 911 daily to eradicate pain from your life permanently.
The formula has helped several men and women get rid of neuropathy and live a life free from the pain and suffering that it comes with.
How does it work?
Nerve Control 911 targets the root cause of neuropathy and helps to get rid of the being and suffering permanently.
According to breakthrough research, the mechanism behind nerve pain is simple.
All types of neuropathy have a common mechanism that can be targeted by manipulating a single enzyme in the body. This enzyme is known as MMP-13, which is toxic to the nerves.
When the levels of this enzyme go up, it affects the collagen in the skin and makes it vulnerable. Collagen protects the skin from damage and is responsible for holding the skin together.
When this enzyme eats away collagen from the skin, it causes the skin to become weak and vulnerable to damage. In addition to that, it also affects nerve endings and causes neuropathic pain.
The body also consists of six other pain pathways that cause neuropathy. Hence, to reduce tingling and pain in the arms, feet, and other parts of the body, it is important to inhibit the activity of all the enzymes that cause neuropathy.
Nerve Control 911 consists of all the ingredients that help to fight information and target all seven pathways that trigger pain and tingling sensation in the body.
Hence, the Nerve Control 911 formula works At the root of these problems and helps to relieve nerve pain. It consists of ingredients that get absorbed by the body immediately.
The ingredients, then, help to enhance the central nervous system and rejuvenates nerve endings by inhibiting the activity of the pain pathway triggering enzymes effectively.
Hence, the formula works to protect against neuropathic pain no matter what the root cause of the pain is.
Ingredients:
Every dose of Nerve Control 911 has an equal proportion of the following ingredients:

• Passion Flower Herb Powder: It helps by eliminating nerve pain, stress, and anxiety that come along with this condition. It helps to release pain from the muscles by enhancing the nervous system and providing a calming effect in all the affected areas of the body. It is also used as an antidepressant supplement in several natural remedies.

Marshmallow Root Powder: This ingredient consists of anti-inflammatory substances that help to soothe pain caused by inflammation. In addition to that, this ingredient supports a healthy digestive system and has a soothing effect on almost all the functions carried out by the organ.

• Corydalis Yanhusuo powder Lutea: It consists of a compound called DHCBHas been proven to eradicate neuropathic pain as well as pain caused by inflammation. It produces a calming effect on the body, muscles, and tissues as well as enhances sleep. It promotes pain relief And has several other benefits related to neuropathy and the overall functioning of the body.

Tulip Prickly Pear: This ingredient has been added to the formula for several health benefits that it possesses. It is useful in treating conditions like diabetes, cholesterol, obesity, and much more. It possesses anti-inflammatory and antibacterial properties. According to research, it consists of antioxidants that protect us from the effects of free radical damage.
California Poppy Seed: This ingredient has several health benefits and has been used for years for its ability to target different neuropathy. In addition to that, it helps to treat Insomnia, nervous agitation, diseases of the bladder, liver problems, and much more. It relieves nerve pain and enhances blood vessels.
Benefits & Advantages:

• It inhibits the activity of pain-causing enzymes.

It provides antioxidant action.
It reduces the damage caused by free radicals and thus reduces oxidative stress.
It enhances the central nervous System.
It enhances the quality of sleep.

• It relaxes the muscles and creates a calming effect on the body.

It provides the body with antioxidants.
It helps to reduce stress and anxiety and calms down the mind.
It reduces toxins that get accumulate in various pathways.
The ingredient also helps to maintain blood sugar levels, cholesterol levels, and much more.
Pros:

• The formula tackles all kinds of neuropathic pain naturally.

The ingredients are backed by scientific research and have been proven to be effective.
It reduces pain naturally and increases mobility, and gives you the freedom for this debilitating condition.
The formula is packed with nutrients that provide benefits for functioning throughout the body and has several other benefits.
Cons:

• The formula is available for purchase only on the official website.

If you are pregnant or lactating or have other health conditions must consult a doctor before using the formula.
Results may appear sooner or later, depending on the severity of your problem.
It has been advised to use the formula In recommended quantities only.
Cost of the product
Nerve Control 911 is available for purchase on the official website only. There are three package options available.
The prices of these packages are listed below:

• One bottle (30-day supply): $69.95 + Free U.S. Shipping
• Two bottles (90-day supply): $119.90 + Free U.S. Shipping

Four Bottles (180-day supply): $199.80 + Free U.S. Shipping
The product is backed by a 90-day money-back guarantee. When you purchase any of the packages, you get access to gifts in the form of EBooks that help you enhance the effects of this formula.
These bonuses have been listed below:

• GIFT #1- Make Your Pain a Thing of the Past With Proper Management: This guide helps by giving you a list of techniques that you can use to manage nerve pain. It is a step-by-step guide that has been set up for you in an easy-to-understand manner. The book proceeds slowly and starts with an easy ‘get started’ module that helps to get accustomed to techniques to manage chronic pain and explains the root cause of pain and suffering. It includes topics like “understand medications” and “discover better solutions” that equip you with all the information that you need to follow to manage pain effectively.
• GIFT #2- Natural Tips for Living With Chronic Pain: This guide consists of natural tips to counter your pain without the use of medications. It helps you to understand pain, equips you with tools to live with chronic pain, and consists of unique methods that have proven to be effective in combating pain.

Final Thoughts:
Nerve Control 911 is the ultimate solve for neuropathy that clears all toxins from all pathways and frees you from the claws of inflammation forever.
This supplement by PhytAge Labs is an excellent dietary addition for anyone who has been suffering from neuropathy for a long time now.
If you haven’t been able to treat yourself for neuropathy regardless of heavy medicines, drugs, and doctor visits, it’s time to try this natural solution which guarantees to treat your problem of its roots.
Nerve Control 911
Disclaimer: We are a professional product review website. We might receive compensation when you buy through our website, we may earn a small affiliate commission. The information contained on this website is provided for informational purposes only and is not meant to substitute for the advice provided by your doctor or other healthcare professional. The products have not been evaluated by the Food and Drug Administration and are not intended to diagnose, treat, cure, or prevent any disease.

Increasing dosage
I am a month in to taking Topiramate (generic for Topamax) to assist with weight loss. My Rx started at 25mg increasing weekly (as tolerated) to 100mg. I couldn't imagine increasing beyond 50mg with the side effects I was having, so I stayed at 50mg for the duration of the monthly supply. I am now waking at 3am, so perhaps it is time to increase to 75mg.
I'm bracing myself for new/ increased size effects. I have liked the deep sleep it has provided. Dislike the loopy feeling and the lightweight alcohol tolerance (I should be weanng from anyway!).
Curious to know if anyone else here was given similar instruction to increase their Rx as above?

I’m coming up on one year post diagnosis/ sober. I’ve made tremendous recovery and I am fortunately feeling better than ever except for some pretty bad neuropathy in my feet that goes up through my knees. Just wondering if anyone has experienced any level of relief eventually. I have prescriptions for gabapentin and nortriptyline, although I haven’t really committed to more than a couple days of dosage without really noticing a change. I’ve also picked up benfotiamine and R-Alpha Lipoic Acid supplements but haven’t had any progress with those either. As my muscle mass and strength is finally returning things like balance and gait have improved dramatically but as anyone with it knows it can be quite uncomfortable. Even if it’s permanent I’ll still consider myself lucky to be alive; it does provide a nagging reminder of all I’ve been through and how much more I have to lose! Just figured I’d ask you all how you’ve dealt with it.

I was prescribed topamax for Bipolar as well as weight loss (I have PCOS). I’ve lost almost 50lms since late February & im stuck at 240. Lately I’ve been eating SO SO much like today I ate steak multiple times and doughnuts and drank sweet drinks. I don’t know how to say no, and I do know it’s because I am also on abilify, which is an antipsychotic that makes you always hungry and stuff. I what dosage can I get on to stop being so hungry and drop a few more pounds? I’m only 20 years old, and I don’t wanna be so overweight, and as someone with pcos, this has been a MIRACLE medication that I’m so thankful for. What dosage did yall get stuck at and move to to see results? Pls help!

Demographics: 23, Female, 5'5", approx 140, Caucasian, possible nerve entrapment
Hx: Ehlers-Danlos, Anorexia, POTS, Headaches/migraines, depression/anxiety, Audhd,
Medications: Buspirion (225mg), midodrine (5-15mg), Topamax (75mg)
Last year I had an EEG done on my left thoracic because for the majority of my life, I get numbness, burning, and tingling that starts over my left scapula and spreads across. The results read, "Abnormal results . There is electrodiagnostic evidence of mild-to-moderate chronic left spinal accessory and suprascapular motor neuropathy. There is no electrodiagnostic evidence of left cervical radiculopathy". I asked to speak with the Dr who did the test and he wouldn't meet with me to discuss it further. So I asked my PCP for a referral to neuro who then sent me to sports for the EDS diagnosis. Since then, every provider who's looked at it has said it's "inconclusive". Fine, whatever. I've been in and out of PT doing PRI and strengthening, I've had trigger point, I've had X-rays and MRIs on my Cervical and Thoracic spine and nothing seems to be alarming.
I was discussing this with my physical therapist this morning because lately, just over my left scapula, para spinal, if I move just right, it feels like I get caught and it sends nerve pain from a single central spot. When it flares, I feel like I can't move. She suggested that I might have a trapped nerve if it feels like something is getting physically caught (I describe it like fibers getting caught on a hangnail, I can feel each fiber). I have an appointment with my neurologist next week, I see her mostly for headaches now, but should I say something about this? I never returned back to my ortho doc and I don't know what else sports med can do other than trigger point injections?
Could this be a case of nerve entrapment of the suprascapular motor nerve? From what I've read, the solution to that is a surgery, but I can't find much information on that either. The only surgery I've ever had is wisdom teeth so this kinda freaks me out