[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.

[(Broken Wings)]

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.

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.

[rbn4jsus]

Yes, i loved the Oprah show with montel this week-wish i had taped it for my friends so they could see it to better understand what I deal with.
I plan to get his new book, need all the positivity i can get right now!
good stuff-glad to see it

I was thinking while watching that there should be a book about TOS specifically, a book of several peoples experiences.

[finz]

I don't know how clinical you would get.

If it was a "tell your story" type thing.....Lord knows I could write a chapter on how to be ignored by doctors who say it's all in my head and imply I am just a drug seeker

Many of us could write THAT chapter......

[dabbo]

Finz- you mean its not all in my head?

ok, that wasn't funny. I'm not sure that i'll ever get used to people implying that or implying that i'm just trying to get some meds. *cough* mother-in-law*cough*

I missed that episode of oprah.... maybe it'll be on one of the on demand channels. I like your idea for a book Tam!

[tshadow]

I have been sick but have started it. I will ask for voluntary submissions later on if somone wants their experience included.

Love Tam

[PittsburghTOSser]

I didn't see this episode, but I've wondered for a long time if MS had similar aspects to neuro TOS. I have a neighbor down the street and when we compare notes, we have similarities too.

I've just recently been getting online here and there... have gotten to a place where I am now re-introducing activities that I eliminated to get my symptoms under control (I started walking 3 miles a day last spring - got to get that started again, as I don't go out much in the winter. I even joined a gym, for the water aerobics and hot tub, but nothing much tempts me to go out in the snow ). But I did manage to go back to the shooting range and can shoot a couple of boxes of bullets through my 9mm and not be in pain the next day (I started out with a .22 and worked up to it). Wonderful stress relief!

Santa brought me an iPod touch and I was delighted to find a non-profit dedicated to TOS one day when I was playing around with it. It's called ATOSA - American Thoracic Outlset Sydrom Association. atosa.org Remember back on Braintalk when we talked about doing something like that? Starting a non-prof is such an enormous undertaking, I know I didn't have the energy to even think about back when I first stopped work. But it's a necessary thing to have I think if TOS is ever going to step out of the shadows and have a place at the table in the medical community.

Tam, if you haven't checked them out, it's worth a look. They have a lot of people who've already written their stories and Gail seems easy enough to work with (I'll admit I've been mostly lurking, but want to get more involved as I'm able). Perhaps you could collaorate with that org for your book?

[(Broken Wings)]

You go LadyParrot.

I know you don't feel like it. Just think about it in the long term. It's what you need to do now to get away from where you are. It gets a little easier as you go along. It's been rough but I stick with it. I am proud of your efforts and encourage you to keep it up.

I'm going to get out my guns and start shooting too. Thanks for the prompto. Good idea. I used to target practice with a 45 pound compound bow. Would like to get to where I could do that again. It's a goal I reach for. I really enjoyed that.

Originally Posted by LadyParrot

I didn't see this episode, but I've wondered for a long time if MS had similar aspects to neuro TOS. I have a neighbor down the street and when we compare notes, we have similarities too.

I've just recently been getting online here and there... have gotten to a place where I am now re-introducing activities that I eliminated to get my symptoms under control (I started walking 3 miles a day last spring - got to get that started again, as I don't go out much in the winter. I even joined a gym, for the water aerobics and hot tub, but nothing much tempts me to go out in the snow ). But I did manage to go back to the shooting range and can shoot a couple of boxes of bullets through my 9mm and not be in pain the next day (I started out with a .22 and worked up to it). Wonderful stress relief!

Santa brought me an iPod touch and I was delighted to find a non-profit dedicated to TOS one day when I was playing around with it. It's called ATOSA - American Thoracic Outlset Sydrom Association. atosa.org Remember back on Braintalk when we talked about doing something like that? Starting a non-prof is such an enormous undertaking, I know I didn't have the energy to even think about back when I first stopped work. But it's a necessary thing to have I think if TOS is ever going to step out of the shadows and have a place at the table in the medical community.

Tam, if you haven't checked them out, it's worth a look. They have a lot of people who've already written their stories and Gail seems easy enough to work with (I'll admit I've been mostly lurking, but want to get more involved as I'm able). Perhaps you could collaorate with that org for your book?

[gibbrn]

I too can't wait for the snow to go and get walking my doggy again....Marc does it in the winter but I just can't go in the cold...muscles spasm and here it gets to -40Far. so absolutely bloody freezing your (doggy parts) off.

I need to get onto the bike again (recumbent and somewhat comfortable) I do after all need to fit into a wedding dress...which is yet to be purchased.

Life for me sort of stops in the winter months here despite our Chinooks.
http://www.migraines.org/about_media/helthsct.htm

http://www.migraines.org/about_media/helthsct.htm (this is my neurologist who gives me my botox....dr. Becker. neat info here.

normally we will get nice winds and weather but this year has been so much winter it has been so cold with lots and lots of snow!!!

so come on spring!!!! Let us get out and play again!!!
love and hugs,
Victoria

[dabbo]

brokenwings- i also need to go back out to the range. even if i hurt just a little more afterwards, i've found that shooting does wonders to take my mind off of everything else going on. that, and the stress relief.... need to get back out there!