[tshadow]

I just moved my Neurology Now subscription online. (The other mag you must write to. Both are free. Both have a TON of information pertaining to nerves that are of interest to us.)

What boils my nerves, is as I read these sites, it leads me to another site, and so on, and I always am seeking statistics on TOS (which there are none), or, I want to see how they describe prognoses. And darned if the don't always say, "with conservative care early, TOS can have a good outcome."

Now that may not **** off some of you, but there are a BUNCH of reasons it ****** me off.

Firstly, when MOST docs don't recognize TOS and wouldn't know it from an attack from a frog from Mars, then how are we to get that early treatment?

And THEN, when these same docs don't know the CORRECT PT, but always seem to want to throw us into STRENGTHENING PT, and grind us to a good but permanent HALT, then what is to be done?

And lastly, what about the rather numerous, growing, bunch of us who despite the right PT eventually (if not early for some) the TOS just still got worse and worse, and we lost of jobs, our lives, our pleasures, and we lived in a torment of pain worse than ever imagined, and the surgery just barely changed a bit of that??? Where are those numbers, who speaks for or speaks up for those people?

So I wrote NINDS and a few other sites and gave them a good pinch of my angst tonight.

I should be in bed - I am in enormous pain now (when I wasn't so bad off) due to my irrational need to want these sites to accurately reflect the full panoply of TOSers...

God help me.

Ah, but if you haven't already poked out of here, do remember to keep your subsription going as pretty soon you'll see a TOSer on the cover, I am POSITIVE.

[astern]

Tam, THANK YOU for speaking out for us - even at the expense of your pain levels!

GOOD JOB!!!!

This issue on 'positive' prognosses ****** me off to no end. I will print this post and cc my attorneys. I just had a long talk with my case worker at Binder & Binder explaining just what you said above. Somehow I feel she didn't give a rats *****.

Apparently GA is 5 months behind, so I don't get a hearing until June. Meanwhile, I get a nice drug addiction, more damage to already dammaged nerves and a blown-out stomach from the NSAIDS.

Keeping you in my prayers Tamara - what a warrior you are!

[dabbo]

I couldn't agree with you more Tam.... everything says "with conservative treatment early...." blah blah blah. I've done some reading in the last 4-6wks about CRPS, and I've found alot of the same stuff- "if you take action quickly enough, then....". I think I was lucky to where I got to a doctor about 1yr after my first symptoms (about 6mo after I first started raising a stink about my fingers being numb and my arm hurting). Still, I don't know how much nerve damage was/is being done. It seems that docs either a). don't know about it, or b). don't believe it, and think you're just looking for some meds. If only they knew.

So, how do WE help them learn to be more agressive and proactive in the future, so that MAYBE one day someone will be able to get conservative care early? Just food for thought. I don't have an answer. then again, i don't have a job, so I have some free time to think about that one....

[finz]

I hear ya Tam......it's pretty damn aggravating

[tshadow]

Just FYI.

It is a good magazine, and everyone should write to the editor to do a TOS article.

It's still free.