[milou]

I have noticed that many have other conditions besides TOS, and symptoms without explanation in the TOS. This is also the case for me. I think, it is unlikely that one person should have so many different conditions, and that it is more likely , that it is all coursed by the TOS.
Think it would be possible to learn something, if we made our own little investigation,so if you agree, tell about your conditions and symptoms, which is not considered to relate to your TOS.

In my own case, i have following:
Restless Legs
Hypermobillity
skipping heartbeats
often get fluid in the lungs when swalloving
stuffy ear - funny feelings

[Jomar]

I get/have/had most of those and they are worse when my neck gets tight.{TOS flare}

I can drink water and for some reason it doesn't go down the right way sometimes. Or a real juicy apple or orange will squirt down my throat and I end up coughing because it went the wrong way.

stuffy ears - the same for me when I flare it is noticeable otherwise OK

those 2 above for me are due to trigger points mostly and those are caused by the tight muscles.

For the legs - I take a Calcium/magnesium blend and that helps it for me.

my heart doesn't skip beats but did seem to beat harder when I was in the severe spasms. {neck & chest muscle spasms}

hypermobility - yes - seems to often be a factor in RSI & TOS

[tshadow]

Originally Posted by milou

I have noticed that many have other conditions besides TOS, and symptoms without explanation in the TOS. This is also the case for me. I think, it is unlikely that one person should have so many different conditions, and that it is more likely , that it is all coursed by the TOS.
Think it would be possible to learn something, if we made our own little investigation,so if you agree, tell about your conditions and symptoms, which is not considered to relate to your TOS.

In my own case, i have following:
Restless Legs
Hypermobillity
skipping heartbeats
often get fluid in the lungs when swalloving
stuffy ear - funny feelings

I do think very strongly that these are TOS. Fluid in lungs with swallowing - you mean choking? We all do that - and it's TOS. The nerves involved act abnormally, and when they swell, they act up. So we have problems swallowing, ear tininittis (sp?) ear swelling, side of the face and molar pain - look at the nerves and where they go, and it is not hard to see why it is caused by TOS. It is no mystery to us "old timers."

The hypermobility has always been discussed by the TOS docs when they do their exam - I remember Dr. Brantigan making sure I did not have hypermobility.

Heart skipping beats has to do with the autonomic nervous system starting to act abnormally. That is why I put up that thread on autonomic neuropathy systems! Read those symptoms! Heart skips beats, full feeling stomach, trouble with digestion...all as a result of the abnormal / damage from TOS that then causes the autonomic nervous system to decline.

I see the full picture.

[milou]

Originally Posted by Jo55

I get/have/had most of those and they are worse when my neck gets tight.{TOS flare}

I can drink water and for some reason it doesn't go down the right way sometimes. Or a real juicy apple or orange will squirt down my throat and I end up coughing because it went the wrong way.

stuffy ears - the same for me when I flare it is noticeable otherwise OK

those 2 above for me are due to trigger points mostly and those are caused by the tight muscles.

For the legs - I take a Calcium/magnesium blend and that helps it for me.

my heart doesn't skip beats but did seem to beat harder when I was in the severe spasms. {neck & chest muscle spasms}

hypermobility - yes - seems to often be a factor in RSI & TOS

As for the ears: Does it get real bad, when you fly? I never travel by plain anymore, because this sets it on with neck and jaw pain, numbnes one side of face and stuffy ear plus bad headace. This can last for weeks afterwards.
Anyone have any advice for that? I do not get far by car or train.

These conditions and symptoms. Do your doctor agree, that this is due to TOS? and how does he explain that?
I hav had surgery on left side (severe vascular TOS) but neither hospital or my own doc seem to know about other than the most common, and i have given up mentioning these things.

[milou]

Anyone who has acceptance from your Doc, that your somewhat odd symptoms are connected, and that somthing like autonomic neuropathy can be part of TOS?

I feel i am left alone with all this and a good doctor who knows about this is not existing
in my country( Denmark)

[Jomar]

Milou,
My MDs didn't get into the TOS thing at all, they got hung up with diagnosis's of multiple repetitive strain injuries . My symptoms moved around a lot{ nearly every RSI except carpal tunnel}.

I finally found a very good chiropractor and then 2 other advanced PTs that did the comprehensive positional testing - to rule in or out TOS and /or c spine problems.

PS - I forgot to add our useful stickys link for you , lots of info to help you sort some of it out -
http://neurotalk.psychcentral.com/thread84.html

[tshadow]

Milou,

I bumped up a thread that we all list a ton of our symptoms, rather than our "top 5."

At first, some symptoms do not seem like they can be related to TOS. But, when one starts reading about nerves, their location, etc., it is easy to see if they are inflamed (swollen) how it can all be involved.

I am not at my 30th doctor. It took me about 10 doctors just to get diagnosed with TOS. Most doctors here in California do not even really know what TOS is - they say they do, but they are so wrong when they say it's just an "arm problem." It's not - it's a neurological and vascular problem, (if it's neurogenic TOS.)

And I am the one who started having autonomic neuropathy symptoms, and the ER doctors did not identify it - I finally did, and then the docs said, "oh, I see that." So yes, it does get frustrating, and one does feel lonely when the doctors don't seem to understand our disease / syndrome / condition.

I met with one rheumatologist in Beverly Hills, Dr. Bluestone, who I felt was fantastic.

Can you continue to seek a doctor in your country who "gets" what you have - maybe a rheumatologist, vascular surgeon or neurologist? These are the specialties where I feel you'd have the best luck.

Take care and please feel free to join us any time. We welcome you.

[milou]

Thank you so much for your answers, and bumping up the old thread. I think, you,tshadow will have bennefit from reading this link.
I will write a post in the latest thread (questions for TOS) one of the next days, that will maybe be of interest for you. OH, i cannot send links yet, but add www to this adress, then you will find it. Very interesting, but it dosn`t seem to be researched for some years. Why???? beats me.....

geocities.com/cerebellartos/CTOSenglish.html?200730

[Jomar]

I skimmed thru it -interesting- here's the link -
http://www.geocities.com/cerebellartos/CTOSenglish.html

I'll add it into our sticky too

[tshadow]

How do we confirm an article like that - that it is reliable, etc. It was so edited and in such medical speech that I was unable to really be able to analyze it.

I hate to take anything in to my doctor for many reasons; because the work comp will claim I'm trying to influence the doctor, that the information itself is wrong or misleading and the doctor relied upon it in any way, and the doctor him or herself is seldom, if ever, happy to read anything outside of what they already believe. So I can't take it in to my doctor.

But it is an interesting piece to start with, and maybe I will try to find out if any of the author-doctors are located near enough for me to call and talk to.

God bless.