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-   -   33 years old and diagnosed with polyneuropathy (https://www.neurotalk.org/peripheral-neuropathy/233086-33-diagnosed-polyneuropathy.html)

chris85 03-01-2016 01:44 PM

Quote:

Originally Posted by banjanti (Post 1201987)
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.

banjanti 03-01-2016 02:14 PM

Quote:

Originally Posted by chris85 (Post 1202054)
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

banjanti 03-02-2016 08:55 AM

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?

chris85 03-02-2016 12:41 PM

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.

ShaggyChic_1201 03-02-2016 01:59 PM

Quote:

Originally Posted by bestbob (Post 1201851)
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

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.

bluesfan 03-02-2016 03:15 PM

Quote:

Originally Posted by banjanti (Post 1202057)
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

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.

banjanti 03-02-2016 03:20 PM

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!

Quote:

Originally Posted by chris85 (Post 1202236)
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.


banjanti 03-02-2016 03:28 PM

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

Quote:

Originally Posted by bluesfan (Post 1202262)
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.


chris85 03-02-2016 03:42 PM

Quote:

Originally Posted by banjanti (Post 1202263)
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!

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.

banjanti 03-02-2016 06:21 PM

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


Quote:

Originally Posted by chris85 (Post 1202268)
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.



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