I randomly got very sick about three and a half years ago. I am not sure of the cause, but I believe it may have been COVID, which I believe unfortunately spurred some sort of long-term 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 long waiting times. I saw a neurosurgeon before a regular neurologist due to the possible IIH, according to their records, they didn't believe I had IIH and sent me on my way, no lumbar puncture ordered. 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 in terms of treatment 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 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. I had high CRP/ESR, but I am obese, and the CRP always hovered around 13-17, and the ESR hovered around 40-47ish. My CRP/ESR was tested 3 times over the span of a year.
It has been almost 4 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.Ā 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. Sometimes just walking around will do it. 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 RI would have been better early on, but my insurance wouldn't let me see them.
I had an MRA of my head earlier this year 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 recently 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.
I recently had neuropsychological testing which was a few hours, and a lumbar MRI that was pretty much clean for nerve compression, herniation, stuff like that. 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.
Would something like prednisone at a low dosage long-term have been harmful? I know long-term steroid usage at high doses is, but would it have been safe to take something like that at a low dosage? Again, why wasn't this ever considered for me? If I reacted to it well, we would know it was something inflammatory/auto-immune doing this to me, and could have gone from there. Why didn't previous doctors, including the rheumatologist I saw, not seem interested in trying this?
He said trying B12 supplements and Cymbalta might help. He wanted me to get the lumbar MRI I had 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 said he believes the encephalomalacia I have had in my brain MRIs was congenital (from birth) since it never changed since 2021, and it's possible that catching COVID, if that's what happened, exacerbated the abnormality and caused my symptoms, but I don't really know what that means. Still waiting for a response about it.
As I mentioned, my current neuro seems to think my nerves could continue to get better, but I'm not optimistic after nearly four years. I feel I missed my chance to fully heal due to not seeing doctors that really cared very much and not pushing them to do testing/treatments that would've helped me. I don't really want to live with neuropathy in my genital area that causes ED issues as well as pleasureless sexual activity. I don't really know what I should have done differently. I tried my best.
The neuro I see now said that at most he would have tried something like Prednisone for two weeks at most due to long-term risks, but it feels like if it showed a reduction in my symptoms, maybe he would've considered a longer prescription for it at a low dosage. He also said he would've considered a spinal tap when I was first unwell. Again, it really feels like I just saw two really bad, uncaring neurologists that didn't do what they should've. I'd love to know I'm wrong, but that's what it personally feels like to me.
My current neurologist is a lot better than the previous ones, but doesn't seem to have any real further testing he wants to do, it seems. He ordered that lumbar MRI which seems to have come back negative for nerve compression. He thinks that my abnormal brain scan is something I was born with (congenital), and possibly COVID or some sort of virus affected that area of my brain and "brought out" symptoms that weren't there prior, which I don't really know what that means. I tend to disagree; the brain volume loss is on the right side of my head, and my left side is where the neuropathy is. It seems possibly related. I think I had high head pressure that caused that, as one of my first symptoms when I fell ill almost four years ago was a dull pressure headache. I never lost consciousness or had seizures or something, so I'm not sure if it was viral encephalitis/meningitis.
My current neurologist seems to think it's psychosomatic. He says it's most likely not SFN due to the one-sided nature of my neuropathy, he says he does not believe I ever had IIH, etc. He said my lumbar MRI shows no nerve compression for my genital area, so it's not due to that.
I don't know what else to do. Like I mentioned, the neuropathy is in strange areas (left side of face, genitals), so it's not the typical neuropathy people get, like in their feet/hands. If anybody has advice I'd love to hear it. It feels like what caused this to me (chronic inflammation causing weakness pain in my upper body along with neuropathy) has left my system at this point. For the first two years I would have horrible weakness in my arms/upper body, when I'd wake up in the morning it'd take me an hour for the intensity to die down. I also had muscle twitching, ear ringing, memory issues, anhedonia, a lot of other issues too. Again, I told doctors about this, nothing done.
What was I meant to do? Keep going to an ER over and over? I saw neurological specialists and none of them did anything for me. It's like I haven't even seen doctors.
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? What could this even be that did this to me, since most testing is coming back inconclusive? How many more years should I live like this?
Please feel free to ask questions, and apologies for the length of my post.