Ok, this is weird, I had recently gotten very weak and tired arms, then had a flare up of pain on my left side up by neck and left arm real hurt. My neurologist thought it was TOS and ordered an mri and mra. I went in today and he said there was no compression, I did not have it. The pain has subsided a lot
but the arm pain and weakness still there. He did say my C-6 spinal disk had some kind of slight problem, neither me nor my hubby can remember what he said! ( Maybe irrition/) He then attributed it possibly to being fibromyalgia(?) and did refer for Physical therapy. I am a bit baffled, cause I also have the vertigo/dizzy feeling since the day it got real bad. I forgot to mention that. Can fibro cause these symptoms? I have had it for 10 years and never anything like this. He mentioned that he could do the nerve conduction test in my arms. So when I was leaving I asked the receptionist if he was going to do it and he yelled out, yes, give her an hour appt. Its just so freaky that the symptoms match so closely. Any ideas? I think he is just doing the nerve conduction dest to appease me? My sed rate and other blood work was fine.

Took years to get a proper diagx for my daughter although I suspect the fisrt w/c doc instinctivly knew what was going on. Also, you may have a body predisposed to TOs for varying reasons, a time bomb waiting for full flare, such as a car accident or fall.....

For one thing there are no "Test" to say yopu have or do not have TOS. Ruling out a lot of other things is part of the road traveled. Now, an EMG/NVC test is not going to be absolutly going to say TOS or not. Not until there is nerve damage to the larger affected nerves will it show on an EMG. That is because the larger nerves are tested that make the muscles move. TOS affects the sensory nerves which are the first affected. Now that you have had symptoms for ten years you may have some symptoms that will show on the nerve test, if it is done and read properly.

For ex. You have a candle and the flame is hot, you brain tells your arm to pull back, the larger nerves...But, if you touch the flame and it burns you, it is red, inflamed HURTS, these are the sensory nerves. They are too small to test.

But, a doctor that treat TOS, not suggest you may have it can just about look at a patient and SEE they have TOS. The posture, flare of the neck, hump shoulders, protective of the arms, cradle,
They do test and have you raise your arms, turn your head, use picks, brushes , a good TOS doctor will spend about two hours taking a detailed history and reproducing, or if they don't reproduce to determine if TOS or brachial plaxapathy compression.

A big one is raising the arms up, like your are being robbed....bring them back wards, that you feel it in the center of your back to reproduce the compression inciting menuvor. Do you have problems with blowdrying your hair, talking on the phone, driving? These are similar positions that incite TOS.

A chest xray can show cervical ribs, or small rib cage or misshappen rib cage or larger collar bone, all that can compress.

If you were my relative, I would check the doctors list or post nearby cities to where you live for a doctor that can diagx TOS, understand its dynamics and NOT guess.

TOS can have all degrees of affects. Some people function, some have more nerv damage. Much of how you accomdated flares, take care of yourself may be an instictive thing to keep TOS just an aggrivation and problem, then disabling life altering disability.

Finding this "Knowledgable" supportive doctor is going to help keep your symptoms down and help you udnerstand TOS. A doctor himself that does not truely understand the dynamics, can steer you wrong.

I really do not feel that you are going to get a quality diagx one way or the other with this doctor, but that is typically. It is a diagx most doctor never see in their career, let alone treat.
TOS mimics far too many other syndromes, and can also be along with many other syndromes.
Dianne

I don't know if you had time to look thru all {or many} of our useful sticky links -- http://neurotalk.psychcentral.com/showthread.php?t=84
first few links-
TOS info:first link has photos of position testing- down the page
http://www.nismat.org/ptcor/thoracic_outlet/
http://tos-syndrome.com/newpage12.htm
http://tos-syndrome.com
http://www.acofp.org/member_publications/thoracic.htm

there's good info in those and some will point you to other info on the sites so explore them fully not just the linked page.

If nothing has shown on testing {of a serious nature} a good thing you can start to do for your self is a home care program.

You can get some library books {videos are very good for this too} and study up on posture and whole body usage /alignment. { like Alexander, somatics, feldenkrais }
also a good and gentle stretching program will help until the docs get things figured out for you.
I really like Sharon Butlers book and website programs and info
{ www.selfcare4rsi.com }

the vertigo/dizziness was a big one for me - it could be vertebral artery sx from the c spine or from muscle spasms or sx from triggerpoints.
mine were from trp/spasms because after those got resolved the dizziness went away.

have you tried any good TOS PT /bodywork from expert therapists that seem to understand what they are doing?

Do you know how your pain & sx came about?
fall, car accident , repetitive injury/posture change over time?

Thank you so much for taking the time to try to help me along. I do have a good Primary Care Doctor who may be able to get me to a Dr. who knows more. THe neuro did refer me for PT but I guess for the c-6 problem? I bought hubby along to help me remember stuff and even he is confused, he thinks doc wants the therapy for that? could that cause TOS like problems? The Doc acted like it was all "likely" to fibromyalgia, but I never had the bad stuff in my arms till Nov, hurts to brush hair, read a paperback in bed, etc. He is rather abrupt but is trying to deal with a lot of different problems with me at once, he said "I think you are highly sensative to medicines"....Ha Ha I tried to tell him that on day one....Anyway I will look at all the sites and see what I can do for myself. I have not had any severe injury, have noticed the tingling pain in neck when sitting for a while. What may have caused the bad flare? And what does sx mean?

I had to diagnose my POTS: http://www.potsplace.com/ problem myself, (Before a Dr. did) and now I think i Have dry eye too. It just gets more and more fun! I'm tired of having weird unusual problems! Why not something say like a quickly dx and treated thing! Well thank you both again.

sx is short for symptoms
dx -diagnosis
hx- history

If it is TOS plus some c/6 pain - be careful of general PT type of therapy - many have had a bad PT experiences because they start the strengthening /weights way to soon for the TOS.
With TOS we tend to get delayed pain/flare ups like a day or 2 after the use that caused the flare.
you might ask drs for copies of your appt records so you can be sure of what was said and dx'd.
many of us have some brain fog too.

many drs don't have in depth knowledge about TOS at all- none of mine even mentioned it or thought my sx weren't "bad" enough to be it.

But they never saw me at the worst times because I had found my good chiro at that time and he did help resolve many sx and then also an expert PT that did mobilize{drop} my stuck and raised top ribs.{from the severe spasms}

As far as the C6 nerve and TOS, I think a lot of the symptoms can be similar; however, as I have had both problems, I am learning to tell the difference. I just had a two-level fusion from C5-7 this summer, and once the pressure was off those nerves some of my symptoms started to improve, including neck spasms and headaches. However, some of them didn't, including facial numbness, eye twitching, hand and arm weakness/numbness/pain, shoulder blade pain, and pain and swelling on the side of my neck and over my collarbone. When I do have pain in my hand (it's usually more numb than painful there), if it's coming from the TOS or brachial plexus area, it's usually on the outer side of my hand, but if it's coming from my neck, it's usually the first finger and thumb.

Before my fusion, both my neurosurgeon and Dr. Sanders had hoped that relieving the pressure on the C6 nerve would ease up a lot of the arm symptoms...but while the surgery did help some things, it didn't make the TOS go away...so even two good surgeons can't always tell the difference between C-spine issues and TOS.

FWIW, Dr. Sanders said he'd never base a surgical decision on the result of an EMG/NCV test, as it can change from day to day. I agree that a diagnosis can be difficult to come by with testing. And I also agree with Jo...make sure your PT doesn't do strengthening exercises; according to Dr. Sanders, my own experience, and that of many others here, they only make the TOS flare.

Just thought I'd share my experience. I hope you can get some answers! Have they done a cervical MRI?

I agree with Jo and Donna- be careful with the PT. My PCP sent me for PT (before I had been diagnosed with TOS and other problems) and it made me MUCH WORSE! The therapist was probably very good and didn't know what all was wrong with me but I still couldn't continue with the full amount of visits that I'd been referred for. He nearly KILLED me- I would come home from there in so much pain I'd have to take Vicodin and soak in a hot bath. Before you agree to PT, I'd want to make sure that the therapist knew what all they were dealing with as far as your symptoms go.

TOS is very hard to diagnose. It took over 3 years for me and too many Drs.
My PCP and PA hadn't had but one case of it in their 20 years each so they couldnot diagnose me. They sent me out so many times that my PCP finally told me to get a computer and help diagnose myself. It took me a long time to do it but when I did I had a PT'er that agreed with me and she knew exactly what to do to help me. After over 4 years of PT though I finally realized that I needed the surgery.

Don't give up and don't let anyone do any major bone popping until you get a diagnoses. I was made worse by an Osteopathic Dr. She was later ran out of our town.

Like the girls said, no test will rule it in or out. The Nerve Conduction Test to me is the biggest waste of money going. I had 4 and they were all negative.

My thought would be go straight to a Thoracic Outlet Specialist to help diagnose you. Make sure he's good because as you'll learn on here some do more harm then good.

Fibro can cause muscle pain and other problems in the arms and hands but believe me anyone that has both can tell them apart once they get to know them. Try to get in tune with your body and sit down and write exactly what symptoms you are seeing and where the worst pain is. Also what hurts you when you do it such as lifting your arms to look in a cabinet, hang clothes on a clothes line or looking at clothes in a store on a high clothes rack. That is a big issue with TOS'ers.

Hope you find your answers soon.
Ada

Thanks again everyone. I can't believe the support here.. My main concern too was that the arm weakness fatigue began in Nov, and then the major flare. And I do notice my neck hurting when I sit and type. I have had fibromyalgia and CFS for years and these were very new sudden symptoms. I have a physical on 9th with primary and will try to find a Doctor for her to refer me too. Or she may know. I live in Maryland if anyone has any clue. And what specialty would a TOS dr. be in? THe pain in my left arm is better....but I still have the vertigo. I will also try to figure out what he wants the therapy for if I don't have TOS. Said something like let them taylor it to your need.I think I am going to switch Neuros too, he is just too abrupt , he seems to mean well, but after years and years of trying to get help for my other issues and having found several good drs, I can just "tell" he isn't the right one for me. I will also get my notes and report from Mri place. I had a C spine MRI and then Mra with contrast. I really don't know if I want those needles stuck in my arms....I mean that just started! Seems odd. Bad cold going around here, I think I may rest my eyes. Can you just walk in the Doctors and ask for your notes? I think he sends mine to my PCP so I will just ask her.

Thanks so much again everyone!

Hi Lailavia, and everyone else, Lailavia, your story is MY story to all but the I have C5/C6, C7,C8 disk problems but man I have been thru almost everything everyone has talked about !! I am attempting Therapy for the third time, and I am so glad that you posted this warning because this just happended to me not to long ago that I got "hurt" from someone not knowing enough about TOS Now it seems that the therapist I have now is better knowledged .

I am sooo thankful for this site , it has taught me ALOT .. It helped me find Doctor's, and helped me Diagnose myself and helped me thru applying for SSI.. (which just got denied for the third time...still fighting tho...) This site and the people are a God send , so make sure you stay with this forum...Good Luck too..