NeuroTalk Support Groups

Hello, I understand where you are coming from I just got diagnosed with polyneropathy and I have very quickly went down hill. I stay very depressed about it and I like you am looking for support I also need it there are days I feel like I can't make it and I have a hard time taking care of my daughter. I don't want to sound like someone fishing for sympathy but its nice to come here and see im not the only one. I too am on nerotin and it has helped some but not much, today I can't walk at all and the pain is horrible just don't know what to do.

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Originally Posted by annieaz (Post 30829)

Hi - I just found out about this site from Brian - and I am happy to be here! I originally used the neuropahty.org bulliten board and then that seemed to always crash, and then moved to the brain talk bulliten board and was desperate for the months that it was down. I hope that this board is active because I rely on the support so much.

I am almost six years into this small fiber pn - starting in my hands and then a few months later went to my feet - but first they misdiagnosed me as having carpel tunnel and I had the horible experience of having bilateral carpet tunnel surgery - which made my hands on FIRE! I can't even think back to that time without breaking out in a sweat. Of course, everyone thought I was a baby - not being able to deal with the recovery pain - everyone except my physical therapist who suggested to the hand surgeon that I might have pn. Sure enough after all the testing I was idiopathic small fiber pn - at that point I went to the Mayo Clinic here in Scottsdale and had another huge expensive workup and same diagnosis - just this year I changed from a "regular" neurologist to one who specializes in pn and the first thing he did was ask for me to have a glucose tolerance test. I had been asking every doctor for this test for many years - but was told over and over that since my fasting blood sugar numbers and my A1C numbers were in the normal range, there was no need to take the test. Well, as my story goes, I took the test and sure enough I was impaired glucose tolerant - or pre-diabetic which can cause small fiber pn!! I know this is a newer idea - but it is somewhat frustrating that nobody would listen to ME - I new that I have always had erratic blood sugar. More and more studies are showing that pre-diabetic people can have small fiber pn.

This was just a month ago and I have started exercising (which is very painful) and trying to eat like a diabetic while awaiting to see the dietician - and have been giving a lot of encouragement from the braintalk friends that others have had this diagnosis and with exercise and diet have been able to reverse the level of pain they have from the neuropathy.

Currently I am taking oxy and lyrica - and I have to say lyrica has changed my life! I had been on neurontin at 2400 mgs and had such a brain fog and switched to lyrica (after trying cymbalta with no results) about six months ago and have switched my pain level from an 8 to about a 4 or 5.

I finally feel some hope in the future - instead of taking more and more drugs, there is hope that I will be able to reverse some of this pain! I am excited to be on this active board and feel like so many of us - I need the support to just get through it all - and I have gained so much knowledge from all of you!

AnnieAZ:)
(I noticed you already had one Annie - so I am AnnieAZ!