VoyForums
[ Show ]
Support VoyForums
[ Shrink ]
VoyForums Announcement: Programming and providing support for this service has been a labor of love since 1997. We are one of the few services online who values our users' privacy, and have never sold your information. We have even fought hard to defend your privacy in legal cases; however, we've done it with almost no financial support -- paying out of pocket to continue providing the service. Due to the issues imposed on us by advertisers, we also stopped hosting most ads on the forums many years ago. We hope you appreciate our efforts.

Show your support by donating any amount. (Note: We are still technically a for-profit company, so your contribution is not tax-deductible.) PayPal Acct: Feedback:

Donate to VoyForums (PayPal):

[ Login ] [ Contact Forum Admin ] [ Main index ] [ Post a new message ] [ Search | Check update time | Archives: 1, [2], 3 ]

[ Next Thread | Previous Thread | Next Message | Previous Message ]

Date Posted: 21:06:47 09/21/00 Thu
Author: Melodie
Subject: LONG!!! My doctor's visit is looking like a dead end!

(Posted on neuro-mancer, ms forum too)

I don't know what to think! My doc is claiming now that I just have peroneal neuropathy (or maybe Stein Levansten syndrome? and an outside chance, 5% of MS).

I have researched peroneal neuropathy thoroughly when he first diangosed me with it; I found nothing like what I'm going through. He also thought it was most likely inherited; nothing like this has ever exisited in my family and my EMG 2 yrs ago was borderline normal, mine this time, a fraction of a response from this nerve, practically non-exisitant.

After he did the EMG/NCV, which will point to MS, spinal injuries, etc, he thought it was MS; now he's saying the EMG does not indicate MS! It was right after he did the EMG that he wrote MS on order for my MRI.

I'm so depressed! Peroneal neuropathy doesn't sound like any fun either; he claims it could be causing my symptoms (unlikely to cause them all) and it can also put me in a wheelchair. I'm already having trouble walking; he mentioned the nerve and muscle biopsy again, but my mother and father are greatly oppossed to it.

He said it would tell what stage I'm in; I don't even want to know what that means. He also said, in repsonse to my mother asking if I should get an EMG in my arms, that the only thing it might show is if it had spread. It sounds as if this only gets worse.

I hate just waiting while I deteriorate! He did set me up with an endocrinologist to rule out the stein.... . He also agreed to look at my MRI films! How gracious of him! :rolleyes: I expect any doc to do that and BEFORE the appointment! I had to go the other hospital and sign my films out for him b/c he claimed that was the only way he could see them; they said all he had to do was call!

An office full of pathological liars huh!

He did give me some med. for pain when I asked.

I'm just really distraut! I feel lousy, my parents won't let me get the biopsies (my mother is partly afraid it might show nothing and then I would have gone through it for nothing; it will cause and area, on my foot, of permanent numbess, but I'm willing to accept that; I need to know I've done all I could!).

I'm afraid that if I have this disease, there's nothing that can be done to stop it or slow its progression, just treat the symptoms. There's no peroneal neuropathy society that I know of; no one's looking for a cure or treatment. I've never really worked, so I can't get disability and I'm in no condition to work now.

I don't know what to do! I can't live the rest of my life like this! It is torture; I don't even really have a life. I knew I would eventually have problems like these, but I didn't think it would happen until I was about 65 or 70. I looked forward to this part of my life and I can't enjoy it.

I just don't know what to do! Everytime I think I'm close to knowing what's wrong, I hit a dead end! I'm so tired of living like this; I don't want to live with my parents for the rest of my life in my little room, in bed. I would do anything, short of selling my soul, to find out what's wrong.

As i said though, he did not completely dismiss MS; the other possibilites seems just as unlikely, from what I've read, as he says it is. It looks like more waiting ahead.

Oh, and get this! He kept saying that "I don't see any need to do anything now, since you look so healthy."!!! UUHHHGGGG! :mad: That was when I made sure he knew I was falling and my knee was buckling. (He had looked over my results, in front of me; it was obvious he hadn't done it before! I doubt he'd looked at my fax either or he would have known I was falling; that was my biggest concern!)

He just has NO idea how much this is affecting and ruining my life! I'm going to make sure he knows! One day on my shoes... would change his whole perspective! It's just amazing how ignorant he is! He also threw me the old, "MS doesn't cause pain" line; as if to say that's why I couldn't have it! These docs that say this obviously have never really talked and coprehended what a person with MS's life is like! I KNOW, from you all, that it causes very real pain.

I'm just so tired of this. I feel like screaming!!!

Melodie

[ Next Thread | Previous Thread | Next Message | Previous Message ]

Replies:

[ Contact Forum Admin ]

Forum timezone: GMT-8
VF Version: 3.00b, ConfDB:
Before posting please read our privacy policy.
VoyForums(tm) is a Free Service from Voyager Info-Systems.
Copyright © 1998-2019 Voyager Info-Systems. All Rights Reserved.