Quote:
Originally Posted by shelley
Dont feel blown off they are only reacting to what they can see on the test in front of them. They are not always intuitive which is why its a partnership between patient and doc.
Keep the neuro appt and lets make a short list of what you need to tell him. I often only go in with a list no longer than 5 things or I lose his attention. I take the emotion out of it and appeal to his logic.
Holly up at the top of the TOS forum we have a list of docs that are experienced. Maybe there is someone in your area.
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I guess I feel blown off because he had the nurse call and didn't call me back personally. Then she says she can answer my questions, but then fails to answer them. I got a lot of "I don't know, you'll have to ask him" and "maybe you'd better schedule an appt to go over this with him". So that made her initial statement that she can answer all my questions pretty absurd.
Good advice about taking the emotion out of it. I tend to be pretty nervous at neuro appts and I just have to learn to take charge of what I need. I will look at that list for people in Pittsburgh, too.
Quote:
Originally Posted by tshadow
From talking to some of the TOP TOS vascular docs, neuros and someone who is considered perhaps THE BEST rheumatologist / immunologist, I was told they do the brain MRI because of the following reasons, and not just limited to this:
First and foremost, the do want to eliminate MS. They're looking for the MS lesions.
But then, they're looking for that Chiari 1 malformation. And othere malformations that mimic TOS but can be perhaps fixed by a brain operation.
And brain tumors.
So there are so many reasons they do the brain MRI plus the stem.
I just had another one, and they all say it's "normal." But I know and the docs know I have quite a few neurological problems...
This is so hard to deal with.
My heart goes out to all of us, because back when I was a work comp defense attorney, I never ONCE saw a TOS report (out of thousands), and I saw people have ortho surgeries and get well. I saw a few rheumatological arthritis cases, and those were hard, but again, for the most part, I just saw people have a problem, get fixed, and get back to either their same life, or pretty darn close.
We need to give eachother kudos for our research, for our unending hope and faith, and for our ability to talk to our docs like friends and not be mad that they can't "fix" us, since this is so hard.
We are a pretty cool group of people, folks, and I mean that from my heart.
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So, can MS really mimic this? Since I do have lesions, that is pretty interesting. I am definitely going to ask my neuro (he is an MS specialist neuro) if I can just attribute this to the MS. I try really hard to not just blame everything on MS, though. I really thought this was from when I fell a few years ago and injured my shoulder (doc said it was a sprain, but the PT said it was more likely a small tear).
I get frustrated because nothing about me is textbook. I seem to have a way of just being atypical. Even the MS. I have lesions, but I am missing the more typical ones. People tend to get lesions in the periventricular area first, but I don't have any there yet. I have a bunch (more than 12) in the subcortical area (from what I've been told MS patients get them there later). So, the neuro calls me "atypical MS" or CNS Demyelinating disease.
You are so right that we deserve a lot of credit for dealing with everything and keeping on. It's hard to live with stuff that can't be fixed. You guys are really awesome.
I am going to get some lunch and head out pretty soon for a massage. I'm hoping that helps something. I know it will help with the spasticity - I can usually decrease my Baclofen for a week or so after a good Swedish massage. So, if the shoulder is from the spasticity, it should improve.