Anyone else in the same boat? - Neuropathy Message Board

stockcarsrus · 04-19-2005, 08:39 AM

I have had all of the usual blood tests... (normal), I have had three MRI's, brain, spine, lower spine, all (normal)except arthritis in the neck.. no bone spurs or anything like that in the neck. No neck pain at all...Had the nerve studies...(normal) had on Friday an SSEP test... (normal) hurt like heck though!!!. Had autonomic testing... (normal)...I still have buzzing in feet and legs, buzzing sometimes in my arms, and new buzzing sometimes in my lips! My neurologist says he doesn't want to do anymore testing, but would like me to do physical therapy for 6 weeks 3x a week and if still no change, put me on Topomax. I was wondering if others have tried physical therapy, and or drugs, and if this is just something that will be undiagonsed and have to be masked by drugs for the rest of my life... very frustrated!!! I cried when I left his office on Friday, it just seems that there has to be something causing this! Thanks for listening!

acl828 · 04-25-2005, 09:42 AM

I apologize up front if this reply is no help. I don't have your specific problem but I very much relate to the frustration of having something going on in your body that you can't find a concrete medical reason for. My issue is with my back. I've had 3 surgeries and was recently told I need a 4th. Anyway, as part of my Pain Management doc's attempt at helping, he sent me for PT and put me on Topamax (because the Neurontin wasn't helping).
You may not have the same result as me but the Topamax was NOT good to me. That stuff made me feel like I had the flu. I felt so sick that I called the office asking to stop taking it immediately. As for PT, this round did not help, in fact, it made it worse BUT that being said, I have had good results in the past and have heard from many people that PT was a huge help. We all react differently.
It's not easy and nothing I can say will help. Just know you do have the strength to get through this rough spot. Hang in there and believe they will get to the bottom of it. Also, if you insist enough with your doc and he doesn't try to help, seek another opinion. From my own experience, I can attest to the fact that some docs get tunnel vision. Good luck to you!

stockcarsrus · 04-26-2005, 02:52 PM

Thanks for the reply acl828. I guess that it is hard as well because I look completely normal. No one around me can understand that there is something wrong with me. I have been taking the Topomaz for 5 days now (low dose) and no change yet, I assume it will be awhile before I notice anything. I went to the Physical Therapist and he looked at me like I was a little wierd for being there... He did the usual tests on me for strength etc... and sent me away with a sheet of paper and some rubber tubing to do some calf stretch exercises 3 to 5 times a day... I think he didn't know what to do with me. It was kind of embarassing to explain that the buzzing and burning in my legs doesn't stop... and my neurologist did so many tests, and does not know why it is doing it.. so he sent me to see him... I have been to two neurologists now. The first one told me that I had neuropathy, and that "these things happen" and that I should wait a few months, and maybe it would go away! I go to this new doctor after waiting 3 months and go through all this testing and they find nothing... so I guess I have drugs to look forward to. Sorry, for the venting... I know that I am not the only one that they don't know the cause of this. I love this board, there are the nicest people here, people that understand. I hope and pray for everyone! Thanks for listening

german30 · 04-26-2005, 03:30 PM

Oh My, Do I agree with both of you. After 4 days at Mayo Clinic( referred by my Neurologist), I believe I had every test possible and the final diagnoses were:
Peripheral Neuropathy possible associated with sicca
Median neuropathy at the wrists.

Well my neuroglist and I were quite sure about this but wanted a second opinion which was pretty much "yes you have PN"!!!

Please understand my frustration with so many doctors saying "you have it, but we don't know how to help you".

My PN is creeping up my legs(started in my feet), I'm losing quite a bit of feeling in my fingers.

So dear friends, thanks for listening, we so often need some encouraging words from those who have PN or our dear spouses.

stockcarsrus · 11-03-2005, 01:30 PM

Well, it's been awhile since I have been on the board. I decided to try the Topomax. I have been on it since the summer and have just quit taking it. I was up to 75mg in the morning and 100mg at night. I also have lost about half of my hair, my skin on my hands and ears became so bad (psoriasis acted up big time!) along with my scalp that I was battling constant staph infections on my scalp and hands ... My husband says that he is glad that I stopped taking it because he says that it changed my personality. He said that I never looked at him in the eyes anymore and that I always was as he put it "out in left field". He acutally said to me last night that it was so nice to look at me and to "Have me back!" WoW! I also noticed my sex drive went way down! I have only been married for 4 years, so this is just not acceptable to me...

I did find some relief from Topomax, but I would have to go up to a higher dose to not feel any buzzing at all in my legs and this scares me. I haven't decided whether or not to take anything else. I have tried amitriptilyn, neurontin, and topomax... not good on any of these. My husband thinks I should just start eating really good and working out more.. (I think he is afraid of me taking anything else because it might change me!) What do you think? Is there a med out there for PN that doesn't have the personality effects?

Thanks for listening again!