33 years old and diagnosed with polyneuropathy
 

Hello fellow sufferers,

I just had an EMG and polyneurophaty has been diagnosed
It's mostly feets and hands, sometimes pain goes a bit up in the legs
I'm pretty much devastated

I don't have too much trust to medical personnel in the country I live, that is Bolivia in South America. I'm from Poland and most likely I'll be going back soon there to see if they can put correct diagnosis

First neuro here that conducted the test send me directly on high dose dicloflenac and Gabapentin without explaining too much or ordering any test that could find the cause
When asked he said it could be an effect of "neurovirus"

I went to another neuro with the result, he conducted psychical exam and said my reflexes are perfect, I have a feeling of vibration etc
He send me to lab, all results for thyroid, diabetes, liver, kidney etc came out fine
I'm still waiting for ANA and ANCA, but reactive c protein is zero
The only thing out of range was was GGT, but all other makers in liver function were fine do he said not to worry about
B12 was never ordered, but I was given a standard b complex

Is there anything missing?
My pain is not severe...yet. I think the neuropathy started about 3 years ago, maybe earlier. But that's the first episode I remember, I was feeling weak and had some flue like pain in my wrists and ankles, first attribute it to some fever, then when I was looking for a cause I couldn't find it. Last for about 3 months then I felt better to the point I forgot about it.
Then it came back for shorter period, again I've ignored it. I couldn't stand still for a long time without receiving discomfort and pain in my feet and calves. I've attributed it to flatfoot
A month ago or so I've grabbed something heavy and I was in pain in my right arm for few days, wrist and forearm, now i know clearly carpal tunnel pain
But last 2 weeks I've felt really ill, little appetite, pain all over, striking and disappearing
I was even diagnosed with rheumatoid fever by a local shaman
Diagnosis seemed ridiculous to me so I rushed to the neurologist
And here I am...it is clear that is neuropathy and it's clear that it progress
According to the first neuro while treating symptoms nerve should heal, but I'm not confident about his diagnosis based only on one exam
He wrote in the report "inflammatory polineurophaty with a compression caracter"
How could he knew if it's inflammatory or not just by EMG?

I still hope to find the cause...any advice would be welcome

I took some ciprofloxacin and levofloxacin for urinary infection and salmonellosis
If it had the effect I guess we'll never know

I'm not taking meds, but I'm tempted to go on gaba...pain gets worst at night and creates more anxiety
But from what I I understand there is no going back when you start taking it

I had neuropathy start when I was travelling in India, I'm 29. Started with tingling in knees then spread out of control when I did some yoga. Doctors told me it could have been some kind of infection. It did start getting better by itself a lot about six months after, then I tried some diclofenac and it went back downhill again. Has been about a year now. I think it can start due to pathogens sometimes, but there are so many possible causes. I'm on lyrica and it helps me sleep pretty well, gabapentin is a similar drug. I'm currently waiting it out and hoping it will pass, I have a neurologist appointment in about a week, they sent me to a rheumatologist first who sent me to the neurologist. They did b12 and diabetes tests and I was fine.

I can tell you as someone who has taken Gabapentin that it is by no means a miracle pill. It basically, kind of works, a little bit. Its a masking agent, and a poor one at that. Its success rate is actually very small in relation to neuropathy pain, clinical trials have proven this. If you are having trouble sleeping at night because that's when the pain is the worst you may consider it for just a night time dose, because it will help you fall asleep. But, there are other routes you could consider as well, Magnesium most notably.

You can get off gabapentin, its not a no going back situation at all. Far from it. Don't know where you got that idea. As a matter of fact, many people find gabapentin tends to lose its effectiveness over time. i personally would avoid it if at all possible, simply because the cons outweigh the pros.

First of all thanks Chris for sharing! I've traveled a lot, climbed Himalayas so to get that diagnosis in my age is pretty devastating. I could live with what I have now, but I'm afraid of progression...

Patrick:
Thanks for your detailed response! What I wanted to say about going of gabapentin wasn't concerning the withdrawal symptoms, rather the fact that if it works I don't think I would risk it and go off to feel horrible again
Now you're telling me it's not even the case. I'll see how long I can manage without it, some nights I fall asleep ok, but tonight I couldn't for most of the night
It's not even very much of a pain, it's a weird disturbance, hard to describe, but I guess you all know it

I started chelate magnesium before bedtime, maybe I should change the time or it doesn't matter?

I read about all the supplements and I'm buying them all. Hopefully they will be of any help

If the pain is really compression related would a surgery be an option if everything else fails?

Sleep is one of, if not the most, important thing when your trying to recover from these things. Whether it is magnesium or gabapentin or whatever it's important to find something that works fairly quickly. Amitriptylene is also good for sleeping. If you sleep well your body has a better chance of recovering so I'd try and maintain it.

I've been talking to a friend who happen to have the sane problem, he said he got 90% remission just by pregabaline 25mg at bed time and alpha lipoic acid
Dose seems extremely low from what I'm reading,
What dose are you on?

100mg twice a day, but i started at 50mg and that is enough for sleeping.

Hello everyone, there is one question asked that I also would like to hear some feedback on. It is, if the pain is compression related, or even Neuroma (scar tissue blocking nerve I believe from a prior surgery), could surgery be a option for producing favorable results?

Best Regards,
Bob

I think your better off consulting a doctor about that one

I've started lyrica 25 mg this night, no side effects...no effects at all, even didn't felt sleepy
Pain seem to be lower, but can't say if that can be related at the moment
Bumping up to 50 this night