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

Thanks for the update.

R lipoid acid sounds worth a blast, I'm thinking of trying it soon for a while.

Won't hurt! I'm starting myself of full cocktail of supplement

The newest update:
My ANA and ANCA blood results are negative, so it's not autoimmune
All blood work is perfectly fine...

I have to clue what to check next, I refuse to put "idiopathic" label in it

I guess I'll check genetics
Will run vit profile as well but I have a feeling nothing is there, I'm a carnivorous and my diet it's pretty reasonable

Lyrica works, first I though it's too quick, but I'm pretty sure now that's it
Luckily no sides with it besides feeling a bit slow and having hard time going out of bed ("just another minute" thing)
When I get up though I don't feel sleepy or dizzy

Now I read all the horror stories of withdraw, I don't think I want to cross the 50mg dose/day, but most likely it will stop doing the trick after a while
What made you go from 50a night to full 200/day Chris?
did it stop working for you at that dose or it never did?

Why did I go up, because of the pain and my dr told me too. Ive improved while on it, probably because of increased sleep. Yeah i feel a bit drugged but on balance its worth it.

All my blood tests are negative too. They told me thats a good thing, but im not too convinced. Its mainly my knees i get it, but a bit in arms, with the tingling hand thing. I guess my nervous system is screwed up.

Im seeing the neurologist monday. Two rhuematologists said not fibro, thats something. I get the feeling I need a miracle after 1 year of this, not seeing many of these around unfortunately.

Since what you want is a theoretical answer, then I'll repeat what I've been told. Yes, theoretically, nerve pain from a compression will resolve in time after the compression is removed. Nerves regenerate very slowly, so amount of damage = amount of regeneration time. What I know for a fact is that post-damaged nerves aren't the same as pre-damaged ones. Things can get a bit wonky, for lack of better word. I have spots along a regenerated nerve that I cannot feel, and even weirder, I can touch point A but feel it in part B. Small price to pay of course, but I did want to mention it.

Hi banjanti

In regard to starting "a full cocktail of supplements" - you may want to consider starting them one at a time with 3-4 weeks between a new one. That way you might be able to tell if it's helping or not. If you start them all at once you won't know which ones are working - equally if you have any adverse effects you won't know which one is causing it. Also keep in mind that some supplements/medications may take 3 months or more to show any beneficial effect - research the therapeutic properties before starting.

All the best for finding some effective supplements and please come back and let us know what you find works for you.

I was afraid of that answer, 50/day seems too good to be true, but on the other hand my friend is getting along on 25a day and says he's fine!

I feel just like you about the results, it's good to know that is not some horrible desiese, but not knowing that it is it's even more worrying somehow
Luckily lyrica took my anxiety away, so I'm not worried in emotional sense

Best luck in the world for your appointment!

I've scheduled one for a professor of neurology that suppose to be really good, but he's busy until June
Another recommended guy may be able to see me in 2 weeks time, that's way better!

I have a clue that regular neuros are clueless, you have look for high end specialist
At least it's what I hope

Btw have you ever tried marihuana or any cannabis related thing?
I've used weed recreationally, stopped years ago, but if that was going to help I might just get high if that will make me painless!

You have a very valid point here, however I'm desperate for a relief
As you've noted it takes time to see if they work

What I wanted to give a shot in a combo advised here:
B12
acetyl carnitine (starting at one gram a day in divided doses)
alpha lipoic acid 600mg a day or r-lipoic 100mg a day
benfotiamine 300mg a day*

I'll report here, hopefully it will be some help for others

Thanks for saying good luck. I think most of these neuropathies aren't a quick fix and it takes time and effort on behalf of the patient, but who knows maybe it will be.

Yeah I haven't smoked for many years, I think it is one of the best treatments for neuropathic pains, at least people with fibro rave about it. Problem is I have a data analysis job so smoking pot probably isn't a good idea.

The other medication that people says works is cymbalta, but I think lyrica is enough for me now otherwise I'll probably feel too out of it. I've been taking omega3 and vitamin d for months now. Something is working a bit anyway, going upstairs is a bit easier now. I learnt is that exercise a sensible amount is a good idea and I've cleaned up my diet recently.

Yeah I know what you're saying, going back to smoking pot is not really in pair with my professional and social life those days, but knowing well the substance I prefer to get high than keep suffering, I'll explore other options first, or just try it for the nighttime

Are you drinking any alcohol on lyrica? I read it's contradicted, I'm a big wine and craft beer drinker, I have no problem leaving it altogether as pain relief is way more important, but was wondering if glass or two can hurt after I get use to the med

No I havent drunk while on it, cant help you there.

No problem, I don't intend to drink any time soon
It seems that lyrica is starting to show some side effects, I had blurry vision in the morning but it passed quickly, I feel some congestive impairment, a bit harder to focus, slower to remember things, I don't like it, and it's only 50mg

Yeah it does effect me a little during the day, but I can stay on top of things most of the time. I was thinking of just taking it in the evening instead.

It's the evening dose only I'm taking, mornings are a bit slow but painless, during the day as it wears off I feel more normal but the pain is slowly going back

What time are you taking your evening dose?
I'm taking it at 8 pm, as I figured it will kick in and make me sleepy by 10, but not ready, actually gives me a bit of a buzz and only later at midnight I start to feel sleepy
Maybe I should take it at 6 pm instead?

I'm glad you've got some painless time there. I take evening dose at sevenish. I know what you mean I can't get to sleep straight away, but only after hour or so. The best time for me is when I wake up, no pain. As the day goes on it gets worse.

Same here, pain progress during the day
7ish sounds like good idea, first I though I need to take it straight before sleep as it will knock me down, nothing like that
I'm also taking 600 mg Alfa lipoic acid, pretty sure it can't work that fast and it's lyrica that knocks down the pain, but if you're not on it give it a try, my friend swears by it, he's getting along just fine with 25mg lyrica and ALA
If I didn't know him I would think it's too good to be true, but unfortunately every case is different
I'm happy I'm getting positive results, but still anxious about the cause and progression