Yes, this is what I was thinking, too.

You and Jo mentioned the MRI and I just have to work up the courage to actually ask about that. I seem to have a problem asking docs to run specific tests. My PCP did have X-Rays taken and all he said it showed was arthritis in my neck.

I just had an upsetting phone call from the doctor's office. I had left a message for the doc to call me back and a nurse called back instead and she basically left me with the fact that the NCV didn't show anything that would affect my bicep / shoulder so there is nothing they can do. I feel so blown off. I guess I really do have to keep the neuro appt now because I don't think I'm going to get anywhere with that office.

Keep the faith Holly.

I had an Mri that showed minimal disc bulge and x-rays really were unremarkable. EMG showed something moderate which is why the doc questioned the X-ray and sent me back to do x-rays with my neck flexed in different directions. And bingo. But it was process of elimination and I had to keep at em.

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.

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.

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.


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.

Hi Shelley,

What kind of EMG did you have that led to your doc having you do x-rays with neck bent? Also, what was the name of the x-ray technique? I had MRI and showed mild disc bulge of C6-C7. The Physiatrist said it was nothing, but my PT thinks it may be a large part of my TOS.
Thanks.

Hi TOStrojan (uh Oh I am a michicgan fan not USC )

I believe it was just a normal EMG of the cervical nerves. Since my mri showed only a small bulge (nothing significant) and my first x-rays did not either. But the EMG showed something moderate which contradicted the other exams.

The doc was the one that brought up the subluxation where he explained the joint was unstable and moving too far beyond its normal range of motion which was leading to compression and pain.

When he sent me for the x-rays I had to put my head back as far as I can while standng striaght and then as far as I could to my chest. On those x-rays I could see what he was talking about and how c6 looked different than the others.

I can PM you the name of the doc and the EMG doc is you want.

Take care
Shelley