[heybro]

When was the first time you heard about TOS?
Who was the first to finally diagnose you?

Anyone during the first five doctors ?

[elap]

Originally Posted by heybro

When was the first time you heard about TOS?
Who was the first to finally diagnose you?

Anyone during the first five doctors ?

I saw over 30 docs over 3 1/2 yrs, mainly neurologists. Not one mentioned TOS. Year 4, based on some medical literature I read while desperately researching what might be wrong with me, I came across discussion of TOS. I made an appointment with Dr. Donahue at MGH who believes I have neurogenic TOS and has offered surgery.

[Sheri_TOS]

Originally Posted by heybro

When was the first time you heard about TOS?
Who was the first to finally diagnose you?

Anyone during the first five doctors ?

1) When was the first time you heard about TOS?

My primary care physician performed some provocative tests and then told me that he suspected I had TOS. I had never heard of TOS before he mentioned it. My doctor referred me to a physiatrist for further testing and to rule out other stuff.

2) Who was the first to finally diagnose you?

The physiatrist diagnosed me. He performed more provocative testing, tested my hand and finger strength and did an EMG/NCV. The EMG/NCV was positive for TOS. I had significant differences in strength between the two hands and was already exhibiting signs of muscle atrophy setting in.

3) Anyone during the first five doctors ?

Yes, my diagnosis occurred within the 1st two doctors. I wouldn't have known what was up with me or where to go. I was just so ecstatic that someone knew what was up and why I was losing the ability to use my hand/arm.

[Emilina]

Mine was actually the first doctor I saw! I found out about TOS (well, Pagett Schroetter syndrome) 8 weeks ago at the ER at 3am!

Originally Posted by heybro

When was the first time you heard about TOS?
Who was the first to finally diagnose you?

Anyone during the first five doctors ?

[kellysf]

Tracy Newkirk, a neurologist, in San Rafael, CA, diagnosed me. It was about 9 months into my ordeal and he was the 8th or 9th specialist I'd seen. Those of us with Neurogenic TOS are harder to diagnose.

[curby]

Son's school athletic trainer was the first to mention TOS, shortly after symptoms appeared (we had never heard of it before that). Then it was 12+ months & 5 different doctors before finding one who would even consider TOS. (current diagnosis: a/v tos, no clot)

[Coop42]

For me, it was a physical therapist I was seeing for my lower back after I blew it out. He had me do something and my hand swelled up, finally in front of someone. I asked him, "Why does my hand swell like that?" He said," I was just noticing that. I think it may be Thoracic Outlet Syndrome."

I was so excited to finally be diagnosed after 11 or 12 years, that I didn't even hesitate at having surgery. If I could go back in time, and take that surgery back, I would. Nothing I can do about it now. That hand doesn't swell up like that anymore but I'm in more pain than I was before that surgery. I haven't worked since.

[brmr19]

First several doctors told me it must be my ms acting up. I knew better and heard about tos from searching different symptoms. I made my own appointment with a vascular doctor, who immediately sent me for an ultrasound and confirmed tos.

[chroma]

I saw a couple MDs who had no clue. My symptoms were all over my neck, chest, upper back, arm pit and down my left arm. Dizziness too. I insisted that it was all connected, but they thought the arm issues were entirely separate.

Went to see a chiropractor for the first time just to get a different perspective. He had been practicing for 30 years and guessed it correctly on the first appointment, but was unable to treat it. Other chiros have had some success.

I then went to a see a vascular specialist MD who confirmed it.

Also, part of my problem was TMJ which I figured out on my own and then saw a dentist to get a confirmation.

Anyway, compared to some people, I've been fortunate that once I started looking for help, I found out what I had within 2 months.

On the other hand, I have unusual muscle spasms up and down the left side of my body. Which is also my TOS side. No one has been able to explain that to me.

[elap]

I should note that among the many specialists I saw, 3 are physiatrists and 2 shoulder surgeons - none of whom considered TOS. The many docs I saw who didn't have a clue are from top hospitals, including Spaulding Rehab, Beth Israel, the Brigham, MGH. Seems there's a general lack of awareness about neurogenic TOS.