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: 19:44:48 09/22/00 Fri
Author: serya
Subject: Re: LONG!!! My doctor's visit is looking like a dead end!
In reply to: Melodie 's message, "LONG!!! My doctor's visit is looking like a dead end!" on 21:06:47 09/21/00 Thu

Melanie I'm so sorry to hear that you are having such a frustrating time with this neuro. I can relate as I am in a similiar situation. Just hang in there lots of folks are pulling for you. serya

(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 ]
[ 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.