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

I can take my own pulse the old fashioned way, or have a friend. Locate the pulse at your wrist and feel it for a while, count beats by the clock if you want, then holding the pulse raise your arm up above shoulder level or as high as need be. if your pulse fads or immediately disappears, well...

(if you have trouble raising your arm(s), get someone to assist you or I would use the wall the push my elbow/arm/shoulder one way or another, for one reason or another.)

I've had my pulse tested several ways (treater preference-their own way), but it was always tested some way, with TOS in the picture, with each provider that has examined or PT'd me. been interesting to say the least. not even a standarized way to manually test a pulse on your wrist for TOS. It's as challenging to treat and diagnose as it is to live with, and keep your sanity about you. again, I say be careful.

Be wise in your choice if you're limited like Canada may be. Even here I've come to the fact that I'm a consumer of the medical industry. I've learned to be wise about where to put my medical $$$$. It's expensive to treat. if some gadget don't help you, return it for a refund. some things help. I've got hundreds of $$$$ for things I've bought to try and get relief at my disposal now.

Seems like I pleatu with most things and can come back later and get relief again. don't know if anyone else has found that to be the case.

You're at the right place for help. Keep asking.

Thanks for the great advice. A year ago I was living with dread, and fear when this first happened. ( I though I was getting ALS) Now I know it is not going to be fatal, it's a pain in rump as well. But I am going to get it figured out. I feel I opened the right door finding this forum.

Hey Laurie,

Welcome I am Victoria from Alberta previously Ontario for most of my life.
I can't understand why you would have to pay for an MRI or CT ever ever ever unless you go to a private clinic in BC. I would check that one out for sure...call your local health network or however your province works with healthcare...not sure sorrry.....I am an RN and loved my job until a lift made me have TOS and a huge messy battle with Workers Comp which I just won!

Having said tht I do want to send my condolences on the loss of your mother it must be very difficult especially with so much going on in your life as well. hugs.....

I think you may want to try to find a physiatrist...if you want to find doctors and then tell your gp who you want to go and see it makes his/her life easier and if you take medical articles and infromation on TOS and how to treat it and what can help with the pain in the mean time...unless you are still breastfeeding then you need to watch everything that goes into you as you must welll know by now.

https://www.cpsbc.ca/node/264

that is a link to the college of surgeons of BC you can go there and look for doctor by specialty and then pick the closest one to you and look them up on the net find out if they have any articles....what they have done..

If you are looking for a BC specialist in TOS I believe DR. FRY is in the contact list.....but by the sounds of it you are north BC and not close to the surgical centers where DR Fry is....I believe Vancouver but could be wrong. He does tos surgery and is aware of TOS.....your doc could call him to get advice???

Another test to consider is a doppler ultrasound of the arms where they put you into provocative positions.....arms at ear level and hands above elbows...so 90deg angle ie: put your hands up move but not all the way just to elbows up and shoulder to elblow at ear level. (am I making any sense here???) Sometimes I ramble a bit.....sorry

That test will check your blood flow into your arms in the prov. positions and that could tell if you have any blood flow issues that may cause swelling and then push on nerves to cause numbness and tingling...Vascular tos.....there are a few kinds of TOS but I won't bore you I'm sure you've looked online to find info.

Any doc who tells you that you are fine cause your emg is negative has NO CLUE about tos....my emg's were all fine but I had a 90% occlusion of blood vessels when my arms were above my head....I have vascular and neurogenic tos.....they did surgery for the vasc and now I deal with the chronic pain of the tos.... a good PT who does passive movement with you may help as well as accupuncture or deep accupuncture ims to help you get through the pain until you can see the right doctors. Can you appeal to the bc health board saying it will take you 1.5 years to get to the neurologist and that is an unacceptable wait time and you want to be seen in a more rapid time and it is up to them to provide the service for you. You need to be seen soon to determine if there is damage to your nerves and then what your options are with the pain and management of your TOS....which to me you have all the classic signs of.

All it took for me to get injured was one lift of a patient the wrong way. This could have happened while lifting your Mom or your kids.....it is not an easy thing to determine.

please feel free to email me or to PM me if you want more help.
I'd be happy to go over things with you. you need to be seen by a neuro asap. or at the very least a vascular guy who will rule out vascular tos for you then go on to management of neuro tos.

take care and try not to worry TOO much....it really does not help.
oh by the way the amitriptyline you were given for stress is a good medication to help with nerve pain and nerve irritation. There are lots of meds to help but you NEED a diagnosis for sure not that tos is ever for sure it is a diagnosis of exclusion and you can get fibroymalaia from tos as it is an attact of your nervous system and the body can overeact to cause fibromyalgia (it did for me anyhow....6 years in pain.....= fibromyalgia)

headaches can be managed by botox injections into trigger points and your head but you want somebody at a major hospital to give it to you for the sake of poor injection........
okay enough for now...

please take care and hope you get the answers you need

love and hugs,
Victoria
gibbrn@hotmail.com

hi, was almost gripped when i was reading your story - so very sorry to hear about your mum. stress can make this condition much worse - lots of stretching and relaxing in hot baths etc are a life saver for me - however i dont have triplets so much easier for me than you i would think!

Reading your symptoms, sounds very like tos....lots of people on here - incl me - have been given the run around and passed from doc to doc each not knowing what the hell to do or not really caring what to do!

So ideally get yourself off to Dr Fry as victoria has suggested - its more ideal to see someone who understands fully the ins and outs of TOS - as i have been in tears in the office of dr's who give me the brush off, so desperate to be believed and taken seriously - DONT ever doubt yourself - its your body and you know its in pain!

take care
x