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Member
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Join Date: Apr 2008
Posts: 239
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Member
Join Date: Apr 2008
Posts: 239
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Quote:
Originally Posted by tshadow
Tracey,
somewhere on our site here we've got this long post where everyone posted ALL of their symptoms, just to see how many weird ones came up. And YES, dizziness (sp?) is one, and can come on from talking on the phone for a variety of reasons, but I'm not a doctor so I can just confirm for you that I have it sometimes. First of all, I have a lot of jaw pain, molar pain, face pain - DiMarie posts some good pictures of where the main nerves go and one goes up the side of your face, ear, etc., and so that explained a lot to me when I saw it. I can't talk on the phone as also my ears hurt. A lot of of us have "tinnitus" as part of our TOS. Trouble swallowing - choking on my spit. I started getting this when I was 42 or 43, so it's not like I was some old lady. I also ran every night, and was not overweight. But within just about 6 months, my life changed in every way...TOS.
I've also had (almost from the beginning) foot nerve pain on my opposite foot, and then my right foot. A few years later I was diagnosed with Type II diabetes, so a doctor could blame my nerve pain in my feet on that, but once I learned I had it I almost immediately got it right back to proper levels via diet and weight loss and actually, the BIG factor, was taking myself off of Cymbalta, Lyrica and the other meds which were not so vital to my pain management. I was having higher liver enzymes which was indicating liver damage also, so it was time to reassess meds. But meds can be such an important factor in managing your TOS also.
This is a lot of information to just lay on you. I can read and see that you are grappling with the ton of it, and you are very young. I hate to see young TOSers - at least I had marriage, children, and got to do that - but then maybe your TOS won't be as bad as mine - I am mostly bedridden as I've said and the first four years I will tell you the pain levels were so high and so constant I felt as if I had stepped into a nightmare that would not stop.
Please look at what I pulled up for you. I think I can see that your symptoms are moving and changing a bit which means to me trouble - don't push yourself to pain, you're like pushing the TOS further.
Please yahoo CRPS as that is a different kind of symptom that many of us TOSers develop and it's hot burning pain with bright red skin, etc., and now for me I am trying to keep it under control with the med Atavan. I don't know why some meds work to calm these nerves and other drugs don't - we're not all the same at all. We are all the same with TOS, and yet, we're all a little different.
In CA I used to organize and a few of us had meetings so we could see eachother face to face. If you PM me, I will send you an email with a picture of ALL the different kinds of women who come to the meetings - young, thin, beautiful, full figure, all ages, but all extremely intelligent over workers.
I really feel you had a strong work comp case before you quit. Now, you will need to fight it a different way, at least in my experience in CA, it would start out probably getting denied until you brought a hearing and brought in ALL of that old evidence of the TOS appearing while you worked - and it sounds like you have substantial proof. So search for a fighting lawyer. You are not alone in your fears of jobs, but you may not know your rights, such as it is not legal for prospective employers to do a work comp search. (Once a new case is filed, yes, then they can check for past claims, and the software for that is closely licesned and governed by the dept. of insurance to insure employers do not misuse it.) Gaps in employment will STILL need to be explained, yes? You just do not have to mention the work comp aspect, and yet, an attorney in your specific area must explain your rights and duties to you. You can't get that from an internet.
Also, if you read my testing post, it is so normal for tests to come back "normal." That is why this is a difficult condition to diagnose - it is done by looking at symptoms and ruling out other confirmable conditions and doing some connecting of the dots. Later down the line do not be surprised if THEN nerve damage shows up on EMGS...but by then you will have no question that you know you have TOS so it's like you won't care...hopefully, with your young age, you can have the brachial plexus release surgery, change your lifestyle quickly and get a good physiatrist who can help you maintain as best of a life as possible.
God bless you.
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thanks again for all the info! its really nice to compare with a fellow TOSser, im really suprised at how much things are making sense to me now...all the little symptoms that i thought we unrelated probably arent!.
the headaches come and go for me, but seem to be getting more often and for longer (for example, i have had to take paracetamol for a headache every day for the last 2 + weeks!). the dizziness is less frequent - sometimes i just feel a bit wobbly, i got sent home once from work as i couldnt open my eyes as the world was literally spinning and my vision was shaking badly. it didnt occur to me that it could all be linked to tos!.
when i went to the doc about my numb foot, he did a blood check for diabetes and it came back negative.
when i did a search for CPRS all i got back was some sort of canadian organisation!
i will PM you as i would love to see those pics!....
many thanks again
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