Hi, Thank you for being here!
A year ago last November I took my mom to Hudson FL to the Bonatti spine institute. She was going paralyzed. We then found out it was ALS. I did a lot of heavy lifting. Suitcases, transferring Mom, pushing wheelchairs etc. It was very stressful. We pretty much confirmed Mom was terminal. I started getting numb fingers and hands bi-laterally. I became paranoid that I was getting ALS. (Mom passed away Sept 08). I went to the Dr. she sent me to the Neurologist (Feb 08). I took my husband (mistake) the did EMG's I was in great shape. ("ready for the Olympics!")
My husband said to Neuro, She is under a lot of stress with her mom's care and dieing.

Soooo... My dr. moved and I went back to an old Dr. I had.
I said remember how I use to complain about my two fingers on both hands going numb? now it is from the elbow down. I went to the Chiropractic and he said "one look at your posture and I think you have TOS" (what the heck was that?)

My Dr. said you has EGM's they are normal so its not TOS. He read my report and said it is stress. Put me on amytriphelyn to try. Sent me for an x-ray report said I had lots of space between my ribs.

So here I sit wonder what the heck to do. I miss my mom she was a RN and always had good advice.

If you not completely tired of my story yet, Thanks for listening. I am going to add a few things.

Years ago I would complain that my neck muscles would feel swollen, I would get nasty headaches ant the base of my neck and a pin in my shoulder blade like a knife stuck in it. (Yes I thought it was heart) I was then sent to same neuro who said, could be fibromyalgia. end of that i was labeled.

8 years ago I had (3) 8 pound triplet girls, two years later a boy. So carrying lots of stuff is a fact of life from babies to groceries to every thing. Anything over my head ie.windows kills me.

I am working with my dentist for TMJ he says my jaw can spasms my bracials and cause numbness and tingling. My hands drive me nuts at bedtime, they are swollen when I wake up. I don't buy the stress stuff. I had a fabulous Christmas and had a great time and did not let the fact my hands are getting worse bother me.

I am asking your opinion on your thoughts. Could it be TOS? If so what should I ask my Dr. to do? What should I do?

Thank you so much for your time.

Hi,
Lets see where to start...

EMG s can be negative but you can still have TOS - it is not a definitive test. just means your nerves aren't damaged yet..
plus it tests the major nerves and not the sensory nerves??{i think that is one reason so many have neg EMGs but still have TOS}

Have you had any cervical spine MRI or xrays ??
- to check for extra c ribs or c spine problems?
that is the next step

start working to correct that posture now
did chiro have any thoughts for that?
mine does PT therapies for me as well as adjustments
low level laser, IF stim { type of elect muscle stimulation}, ultra sound, trigger point massage etc

check our useful stickys too...

we can help you figure it out

Hey guys,

I posted a respone in new members which I will also copy here.

Hey Northern girl,

I am so sorry fo the loss of you mom and the added stress and frustration of trying to figure out what is going on.

I have a couple of thoughts for you.

First I have TOS and TMJ and a c5/6. Essentially I am a mess at the neck and shoulders .

One of the first things is the TMJ. MIne was very bad. I would wake up with headaches and pain in my ears and even off balance from all the clenchin I was doing. I went to my ENT and he immediately thought of TMJ and sen me to my dentist who made a custom bottom night guard for me. It has given me significant relief and it was realtively easy fix. NOw when I say fix, the tmj is not fixed but much better managed.

Ok onto the TOS. I know you said the whole arm goes numb up to the elbow but did iut star more with the little finger or the thumb and first finger.

I ask because while I have TOS, I also have this thing called a c 5/6 subluxation or a retrolithesis and sometimes its the TOS that bothers me and sometimes the cervical issue. I know its the cervical issue when the thumb and first finger go numb on me and the TOS when its the litle fingers and the others.

Try to find an ortho or a psine doc that can take a look for you. SOMetimes it takes an EMG, an MRI and x-rays to help determine things. Ask for flexion and extension x-rays so they can see how your cervical spine is moving and if its putting any presusre on the nerves.

And you doc needs to do some reading on TOS...you have plenty of space between the ribs. pppppssssshhhaaaww....how bout between the clavicle and the ist rib. DId he even do some of the tests for TOS where they lift your arms in the air and check your pulse to see if it goes away?

Also ask him for a PT prescription with someone knoweldegable about TOS and cervical issues. Sometimes it helps sometimes not.

It sure sounds like whatever it is that from all the lifting ect (which is how mine happened) that there is pressure or pulling on your cervical nerves or your bracial plexus.

In the meantime here is the link to the TOS forum.

http://neurotalk.psychcentral.com/forum24.html

Keep us posted.

I feel your pain... oh how familiar when I read what's going on with you and Jo.

Jo has good advice.

Have you had a doppler test, where they do a test on your pulse at the wrist, bleep-bleep, first with your arm down in a sitting position. then they raised my arm up and the bleep went away. it's an audible, bleep-bleep. Painless. A cardiothoracic surgeon's nurse done the test on me and then the doctor did the test in the presence of the nurse. This cardiothoracic surgeon also said, "You have bilateral TOS. I'll cut you but I won't testify for you." That was about 5 or 6 months after the accident.

There's lots of tests and things that can help you. You just have to be a good pilot. Be careful in your quest for help.

I was so pain wrecked (back and neck too) I was right over his head. He couldn't see beyond bilateral surgery $$$$$$$$ for him.

He wasn't including my scalenes. so he would have done more damage if I had agreed to surgery by him. Find a good doctor... they're out there too.

The medical journey with TOS and other injuries has been cold, heartless at times, and costly... all at my expense.

The more you learn the more able you are to discern. Get an anatomy book, online atlas of the body, library. try to understand your body's structure in relation to your pain. You're unique. It also helps you to describe it to your providers.

Thank you for the information and support. I live in Canada and have medical. The doctors will do stuff for you if you ask and give a sound reason for the request. ( They don't like being sued for not doing stuff) I live in a small community and it's 3-6 months to see a neuro and 1 1/2 hour drive. I live next to the local doctors office. He is a good GP but ...
I had b12 test, my chiro said it would not hurt to follow up with a rheumatologist for fibro. I has a blood test that did not show up (? antibodies?) to support that. He looked at my neck x-rays and said my x-rays look good. No one has done the pulse test with arms up or out.
What makes them tingle so bad a night? Is it lack of blood circulation to the nerves or is it just the nerves? I am going to make an appointment this week to see the GP. I have been putting it off because I feel if you don't know what wrong with you or what you want them to do they pat you on the shoulder and say come back in 6 months. Actually the nuero said if I am still concerned come back in 2 years.
The GP said he could send for a MRI or ct scan if I want to pay for it because only a neuro can order one. But will it show TOS?

Thank you in advance for your opinion, and support.
Cheers Laurie

hey, need to add to comment.

in re: "YOU HAVE BILATERAL TOS. I'LL CUT YOU BUT I WON'T TESTIFY FOR YOU." I didn't even ask this surgeon for causation. I was hurting so bad and his bedside manner was so cold, there was no way I'd lay down for his *** to cut on me. I bowed up right there.

oh, yea... and his typedwritten report was very vague but not too damaging... just vague... but there was a neatly handwritten note on that report that read something like, "the patient didn't obliterate in either direction." that was it. no signature, date...... liars... no doctor has neat cursive handwriting like that. He got someone to write that and mail it out as part of my medical record with records request came through... remember "I won't testify for you" well, I wasn't able then, and my attorney didn't pounce on it because he didn't think about it or he would've been challenging and impeaching "my own doctor" on that neat handwriting. I just wasn't able to deal with the legal side of it, although I work in the legal industy. outcome not too good but I was holding a lot of bad cards. preexisting, still working (self employed-couldn't do a regular job then if my life depended on it.) oh... and Dr. Powell ---- strike 2 for my doctors helping me out with anything. I didn't really ask them for legal/causation, but they didn't have to hurt me like that either... I am very disappointed over many things through this experience.

I do understand.