update
 

Hey, just a short update from me. (31/m/uk)

After 5 years of symptoms I finally completed all of the available tests: MRI (brain and spine), lumbar puncture (and subsequent blood patch... a truly horrible experience for me but feeling better now, and happy i did it), and then a multitude of blood tests for everything going. All of them came back negative/ all clear. I also did a 2 months of a strict elimination diet, and although i didnt find any triggers there, it was probably the most useful to me to rule out everything food related.

This ultimately leads me back to the unsurprising conclusion of idiopathic neuropathy, most probably small fiber. I did ask about a nerve biopsy but they said that can do more harm than good.

The diet really closed a lot of questions up for me and now i just keep a minimum symptom diary and try to forget about the symptoms as much as possible. Paying too much attention and stressing about this stuff just created more worry, and that definitely didnt help me.

So now i feel happy to accept the 'diagnosis' - (im so bored of being tested! :D) and im not in bad shape really, i still have the same issues of burning fingertips/ hands when touching objects, and also some prickling issues in my left foot/ leg but it doesnt seem to be progressing too fast, so thats good.

In conclusion, after 5 years im basically still in the same place but thats okay, 5 years ago i think i wouldve taken that ;)

Cheers,

Jim

Just reading your post and thought I'd throw this out. And I've posted about grape seed ex before here and on many other groups. But a friend deals with ideopathic nerve damage and has done the drugs with all the side effect gifts and she's now in her 5th yr of taking grape seed extract, feeling much better and off the nerve drugs like gabapentin. She's been told ideopathic but she was taking statins for many years, now off them and I believe she has undiagnosed diabetes.

Personally I deal with nerve damage from hip replacement, thigh numbness and tingling is about gone, and it can come and go...but not much and it's 7 yrs since surgery.

I've been taking grape seed extract for 22 yrs and it's a salvation in my life. Just a share. Take care.

I'm pretty much in the same boat. I'm closing in on the four year mark from when this started, and went through all the same testing. The only abnormality that showed up in them all was an abnormal something-or-other on the brain scan that was deemed insignificant.

I actually just saw another neuro for the first time in 3 years, and she had nothing new to offer up. She did order another brain scan with the same results. I have a referral to see an endocrinologist since I have weird metabolic things going on, but haven't followed up yet.

Your statement about "taking it" with regard to being in the same place 5 years ago pretty much sums it up. When this started four years ago, I was petrified. While I would of course love to get rid of it, I've accepted it as my fate. Not that won't still keep trying to get to the cause, but I've accepted I probably won't and can live with that.

:grouphug:

janie

On another group a shingles discussion is going on and I've never had shingles and don't but into the vaccine. I'm 79 and so far I'm good. Here's a thread here on Lysine and neuropathy and shingles are mentioned etc. I'm back on Lysine daily. On an empty stomach. I don't want more aggrevation.

https://www.neurotalk.org/pn-tips-re...71-lysine.html

Thanks @janieg , i have always considered you and I to be in a similar position from reading your posts on this board, and with that in mind im also glad to hear you have come to a similar conclusion; It is very scary to suddenly have these conditions thrust upon us one day but further down the line you realise that fear is holding you prisoner. I will always try and figure out what it is that caused this and how i can improve it but now i know to try keep it from being an obsession :)

I currently have my first ever prescription for pain meds (amitriptyline) but am still reluctant to start them as that will prevent me finding a cause. My current plan is to try R-lipoic acid and lower my carb intake. Lets see if that helps :)

Thanks for the information, Caroline2, regarding Grape seed extract, its not something i have thought about trying before but you have definitely made me consider it. I wonder if anybody else has any experience with this supplement for SFN though as i cant seem to find too many references to it on this forum at least. Though i did see that sometimes people refer to *Grapefruit* instead of *Grape* Seed Extract, which is somewhat confusing :D are they actually very different supplements??

Hi JJJ,

I'll be anxious to hear your results if you try the amitriptyline. I've heard it can be very helpful for some. My new neurologist encouraged me to not be afraid of gabapentin if I started suffering too badly. I will go that route if a I have to at some point, but I haven't given up on finding the magic bullet.

Finding my genetic biotinidase issue and effectively solving my hypoglycemia problem has encouraged me. I wish it had solved more, but I'll take what I can get.

Lowering carbs certainly can't hurt. A co-worker of mine had a diabetic crisis with her A1c going to 13. While she was trying to get herself straightened out, she noticed one of her feet started buzzing. She said it felt like a vibrating cell phone going off against her foot. As soon as she got her A1c down, the buzzing stopped.

janieg

I'm talking GrapeSEED Extract not GrapeFRUIT, the seeds from grapes are powerful antioxidants containing anti viral, anti bacterial, anti fungal properties....It can be confusing for some as I've found out.

i would like to try gse. i looked on amazon but there were so many choices i gave up. what brand & form do you take? i have gi tract sensitivity & wonder if gse is well tolerated. also, how many mgs. do you take? do you take it with or without food?

thanks!

Don't buy a product that says GSE on the bottle. It's a liquid anti viral from GrapeFRUIT seeds. I don't take this one.

The two get confused by so many people.

I take it mostly on empty stomach but if you have a GI issue, take it on foods.

Start with 100mg and try that for a short time and then go to 100mg two times daily. Amazon has MANY products and I've taken various kinds over the 22 yrs taking it,,,,I like Olympian Labs and they sell a 100mg cap. Now Foods is good, Source Naturals is good and there are so many quality brands. Good wishes. C

hi caroline! thanks for the explanation & info. will head to amazon for the Olympian Labs 100mg.

i will update in a couple of weeks.

regards...