Hoping for a proper dx in the future.
 

Hi, I'm new here....I'm 41 and live in Pennsylvania. I love playing video games, learning languages, and having a good laugh. Oh, and I'm a huge fan of the tv show Hannibal (and the actor Mads Mikkelsen). Anyhow, I guess I will explain what brought me to this forum.

About 8 years ago, I experienced some burning pain in my right ankle and also heel pain when exercising. I was tested for gout and it came back negative. As for the heel pain, I was told I had plantar fascitis. Eventually, the burning pain in the ankle subsided (but the plantar fascitis never healed, even with physical therapy; just is a little more tolerable, as long as I don't engage in high impact activities, such as zumba).

A year or two later, I woke up one morning to excruciating burning pain in my right thigh. I literally jumped out of bed, screaming, from the pain. I went to the ER and was informed it was "just a pinched nerve." I didn't have insurance at the time, so I couldn't afford physical therapy or anything. Around the same time, I also began having issues with fainting when I laugh or cough too much (which one would think isn't connected but it might be?).

Fast forward to a few years later, after I moved to Pennsylvania and finally got health insurance. I was still experiencing the burning pain, mostly at night when sleeping; usually in my right leg but sometimes in my left also. On a few occasions, I also had the burning pain in my lower back. I went to my neurologist (I also have chronic migraines) and she did an EMG which showed nothing. She said it was just "maralgia paresthetica" and to lose weight. She did prescribe Gabapentin, but I had a bad reaction to it, so I can't take it, and referred me to physical therapy (which did nothing to help alleviate the pain).

I was skeptical of the diagnosis so I asked for a second opinion...the second neurologist also did an EMG, which again showed no major nerve damage, and so they too said it was just maralgia paresthetica.

Two weeks ago, I had a pain management appointment. I'm so glad I went! The doctor did an xray and didn't see significant narrowing where the nerve is (if it was marlagia paresthetica). She gave me an injection in my hip and prescriped Prednisone and Flexiril (neither of which has helped), and referred me for an MRI (which I have later this month). She said depending on if the meds help (they haven't) and depending on the MRI, she might refer me to Rheumotology because she thinks it might be an autoimmune disorder.

I'm so grateful to find a doctor that is thinking outside the box! Since the meds haven't helped, I did some googling about nerve pain and autoimmune disorders. Obviously I can't self-diagnose a medical condition, but from what I've seen, it looks like I might have small fiber polyneuropathy (which is technically a symptom, not a disorder itself; but from my understanding many cases are "ideopathic").

Anyhow, I'm here in hopes of finding others that can relate. If anyone has small-fiber polyneurapthy, I would love to ask some questions about your symptoms and experiences.

Sorry for the long intro. :p

Welcome,
You can explore our PN forum (SFN is included in that forum)- https://www.neurotalk.org/peripheral-neuropathy/
or use our search tool to find small fiber or specific symptoms that have been posted about..

Hi Dannibal,
I don't have small fiber neuropathy but would like to welcome you--and to say that doing a search here as Jomar suggested should be helpful.

For instance, there's this:

https://www.neurotalk.org/peripheral...ber+neuropathy

Welcome Dannibal. :Wave-Hello: Others will be along.

Hi Dannibal

Welcome to NeuroTalk :).

It is good to see that you have got helpful support from medical doctors.

Best wishes.

Thank you, everyone, for the welcome (and for giving me some guidance on where to look in the forums). :cool:

With that symptomology--
 

--a diagnosis of pure small fiber neuropathy would be unlikely; the usual presentation of small fiber neuropathy would not start in the thighs.

There'd more likely be symptoms in the furthest reaches of the extremities first, but if progressing, it would slowly "crawl" from the those extremities towards the center of the body.

Meralgia parasthetica cannot yet be ruled out--it's very hard to image the spaces through which the lateral femoral cutaneous nerve passes and may become compressed. But yes, there is also the possibility of one of the vascular autoimmune conditions that can have neuropathy as a symptom; these neuropathies are often patchier in distribution (sometimes referred to as a mononeuritis multiplex).

See:

Immune Neuropathies: Axonal

I realized recently that my description of my pain is not entirely accurate. I've called it a "burning" pain, not realizing some might mistake that for a "sunburn" type pain, which is not what I experience. (Although, I've had many sunburns over the years, being pale and with freckles, lol). I guess it's more like an electric shock-like pain? It's really hard to describe accurately. It was the same type of pain I had in my ankle / foot years and years ago (which eventually went away on its own; never found out what caused it).

When I googled "electric shock-like pain in the thigh," there was one maybe two sites that listed it as a symptom of meralgia paresthetica, but most don't mention it. Secondly, I have noticed that in diagrams and descriptions of MP, they say / show it on the outer side of the thigh. Mine is on the top / front of the thigh (in both legs; right leg is just way worse).

Either way, just something I've noticed. I'll have to make sure when I see the doctor later this month, to clarify what the pain is like.