Re: Were did you all go -- LIMBOLAND

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Date Posted: 02:03:12 11/07/00 Tue
Author: Melodie
Subject: Re: Were did you all go
In reply to: Denise 's message, "Were did you all go" on 09:02:08 10/25/00 Wed

***This is your LONG post warning...

I'm confused at the moment!

For those of you who visit MGH, you know that I looked at my chart; in that were many mistakes about my history and symptoms of which he had a list. In addition, I don't know if he's lying, dumb, incompetent, lazy or what, but he told me I had to sign out my MRI; he couldn't do it. Okay, I went to get it and they said all he had to do was call! Then, the day I peeked at my chart, there were no notes and had been no calls about my MRI, that had been sitting in his office for at least a month (maybe 1 1/2).

I'm just really frustrated (AGAIN!; many times this has visited me!); I don't know what to think. I've also got another problem with him; he said I couldn't have MS b/c MS doesn't cause pain! ISN'T THAT WONDERFUL!! NO ONE WITH MS HAS ANY PAIN; DO YA? I can't believe a neuro with Ms patients could say that! I'm taking him info from neuros and studies showing that Ms patients DO have pain and he'd better at least look at it!

He also mentioned a spinal tap several times in his notes, but not to me; I've had a lesion in the past and he did and EMG/NCV and a MRI and left it at that. That's not conclusive one way or the other! He also never told me about more nerve damage; my sural nerve was nonreactive too and in the left leg which bothers me more, but no, this is all peroneal neuropathy.

Needless to say, I'm thinking about begining the neuro hunt again. I hate to do that; I at least like this guy's personallity and he believes that I am ill, but he's not doing anything about it (except some Neurontin and pain med, which I do appreciate; he's the first neuro to do that for me).

I don't feel like he really understands what this is doing to me though; his interpretation is that there's no need to do anything b/c "I'm doing do well". (The not doing anything part is not doing a nerve biopsy yet, which my parents said no to anyway. I don't really want it; it would leave part of my foot numb for my life, but if there's even a chance it would diagnose me, I'd do it without question. It doesn't seem likely to help anyway; he thinks this is inherited even though NO ONE in my family has ever had it. That's what he'd be looking for in the biopsy, not sarcoidosis or something else that mimics MS.

I'm going to my next appointment (hopefully armed with research) and demanding answers: what he think's wrong, what he intends to do about it, the mistakes, etc. I don't want to spend 3 more years waiting for answers.

Melodie

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