Does anything in my story seem like a lack of following the appropriate standard of care doctors should have? I never fully healed from my health issues and it feels like doctors didn't do as much as they could have to have helped me. No spinal tap ever done even with possible encephalitis symptoms.

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 my have unfortunately spurred on some sort of 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 from late 2021 to early 2024 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. That was very distressing and worrying to find out, as I wonder if he didn't do all he could have to create a better prognosis. All I know is that I'd have to have a future doctor say this doctor missed something he should have done to create a non-permanent health issue for me, something along those lines.

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 in Rhode Island. 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'm upset as I feel like doctors in another state bordering mine would have been better early on as they got better reviews, but my insurance wouldn't let me see them.

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 from my previous neurologist 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.

I called my previous neurologist's office after switching to my new neurologist and asked them why they did not consider anti-inflammatory meds for my nerve issues when I had first seen him. It took me over a week to get an answer, and one of the people on his staff that I talked to told me they believed that I had been put on Prednisone for inflammatory issues at the time (I wasn't) and that nerve damage can't ever fully heal, which is why they only tried vitamins and gabapentin on me. She said it was this doctor's "standard protocol" and talked over me and talked down to me.

It was very depressing and upsetting to hear his staff say that and act like that when they had never said to me in person that I had a permanent nerve injury while I saw him and his staffers as a patient. I also believe it's incorrect, as I have had some nerve improvement in areas of my body with the passage of time which if they had actually treated probably could have fully healed by now, so it was strange for them to give such an upsetting prognosis to me after all these years. If I had had the first neurologist I saw actually try testing me instead of brushing me off, I wouldn't have been stuck with this quack. I remember this neurologist who only tried vitamins and gabapentin had Gerson Therapy books in his lobby, a practice which is banned in America for being a quack cancer treatment.

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/a lack of care from doctors?

Please feel free to ask questions, and apologies for the length of my post.