Quote:
Originally Posted by tshadow
Did anyone have a chance to see Montel on Oprah?
His MS has many aspects similar to neurogenic TOS.
MS is holes / lesions on the outside covering of the nerves.
Neuro TOS is crushes along the nerves.
Both end up with misfiring nerves, nerves that cannot "talk" to the brain correctly or work correctly in our bodily systems.
I found 3 things very enlightening.
First of all, when he talks about having pain 24/7, he cries repeatedly like a baby. Having met quite a few of you TOSers - WE do not cry that much! WE "suck it up" like I have never seen...and our doctors do not appreciate how painful TOS is, how constant that pain is (for most of us) and yet, Montel, with MS, is "accepted" by the docs / Oprah for the pain.
#2, he has left foot pain. I have left foot pain. (Not on right.) I find this odd. This seems to be a similar connection between MS and TOS.
#3, he has that "hard to breathe" thing that I developed last year, where the chest muscles get really hard. He explained my experiences to a "T". How odd again, the similarity. (I believe that this symptom is "autonomic neuropathy" that comes and goes as our bodies fight to be healthy.)
Lastly, I just want to reiterate that neuro TOS is a neurological syndrome and is not an "orthopedic problem" as I've heard so many docs dismiss it as. The docs need to understand that as a neuro syndrome, that we all will not have the same symptoms or to the same degree. Just like MS, we come in different shapes when we walk (or wheelchair) into the office.
My aunt was an editor of large publishing house. Although she is 70, I have asked her to help me by writing a book about Neuro TOS because I am so frustrated by the lack of knowledge of this syndrome which I developed due to overuse of the computer. If anyone wants to contribute any ideas, please PM me.
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I too would like to write a book about my experiences while learning how to live with TOS and related and unrelated medical problems.
You make great points about the similarities of MS, yet we do not get respect for our conditions. On the contrary. I mean, like we want this to have to deal with. I do feel violated by some. Helped only by a few.
And I've also thought that they don't know how to help us so they try to pass us off onto another field of medicine till we're exhausted at the lack of conformity in the diagnosis and treatment of TOS... but we don't go away.
You are always informative. You have compiled a lot of good information. No doubt you've spent relentless hours searching for answers or solutions or just an understanding. You have my support on your book.
I don't know specifically what to contribute, but I would like to contribute something. It's certainly worth the effort.