Terrified. Please help.
 

I believe that I may have TOS.

My hands have been like numb ice for months (no color changes), I've had muscle spasms, stiffness and tremors in them, and lately I've been experiencing a heavy, weak feeling in my arms, especially when blow-drying my hair. No pain to speak of, but stiff muscles. I have loose joints to begin with, and my shoulders "pop" a great deal, especially after computer use.

A recent EMG came back clean, but I ran my TOS fears by the neuro anyway, and he said he didn't think so. I also had a vascular test where they put "cuffs" on my arms to measure bloodflow, but I don't have the results yet.

Still...:confused: What sort of doctor should I be going to? Will I lose the use of my arms/hands? Please...I would appreciate advice from anyone.

Have you had any MRI or xrays of the c spine to rule out any causes from those areas?
Our sticky threads are full of info to help with a crash course of knowledge.
http://neurotalk.psychcentral.com/thread84.html

Do do do repetitive work, or any previous whiplash type of injury?

I know you are scared. I have never had the popping shoulder. But everything else. My guess is you have a weak tricep and serratus anterior on that side. But I recently went to a physical therapy class that address that issue and many more. Are you in the States? If so, please look into Postural Restoration Physical Therapy. They really do have a thumb-hold on all these problems. :hug:

Thanks for the replies, guys. I really appreciate it. :)

No, I haven't had an MRI of those areas. I have had an X-ray of the ribcage area, which was normal with some arthritis. I've had mild whiplash, and I'm on the computer for hours at time with work...the problem started with my hands, and it just seems to be getting worse. I'm baffled.

concolour took the words out of my mouth

you really need to pay attn to this, dont make it worse!

are you hypermobile? like ehlers danlos syndrome?

i gave myself whiplash too! it sucks. it's even worse tho if you have shoulder issues. you need to find a good pt. dont do resistance band exercises

Also check your posture in a mirror, head forward/shoulders rolled or hunched forward?
some pics & simple things to try on my album page -
http://neurotalk.psychcentral.com/album.php?albumid=422

I also concur with the others. I had an MRI (arms down) and it didn't show anything. However, I had an MRA soon thereafter where they had me in an arms up position and injected me with a dye. They were able to see the blockage in my subclavian artery. Please get an MRI/MRA and tell them what arm positions you have symptoms. This will not go away by itself.

Hi Vivi fruit,
Dobbler testing and angiogram picked up on my arterial/venous occlusions when arms raised and back or out to the side.
Vascular doc for these issues.
Best wishes and try as much as possible to relax your muscles with gentle stretching and meditation maybe?
Symptoms can very easily get the better of you and make you depressed so try and take back some control. EXAMPLE: tonight my ears ( pulsatile tinnitus) are driving me absolutely crazy!!!!!!! Such a loud pulsing sound.:mad:
So I'm gonna try to imagine that I can hear rhythmic waves crashing against the sands of a Maldivian island instead..... what else can you do????:winky:
KEEP STRONG! xxxxx

Feel for you. Been where you're at and fear the loss of use of my arms too. Best to find stretches and things which keep your symptoms in check. Best of luck.

I feel so much less alone now.

My posture is your standard hunched-over-the-computer-in-my-cave, which I suspect doesn't help. :winky: No idea about Ehlers-Danlos syndrome, but I do have hyper-lax joints...always something cracking or popping. I feel like my arm kind of goes out of its socket at times.

I've got appointments with both the vascular and ortho docs coming up in the next few weeks. How do I go about getting properly dxed, or at least have my concerns taken seriously?

My GP originally suggested that my cold hands were just "nerves"--something I was more than happy to believe until the other symptoms started. I feel stupid for doubting myself. :( Hoping it's not too late to somehow get this resolved...

See a vascular surgeon/specialist and describe all your symptoms including positional aspects of them.

I've noticed many avg MDs don't really like it too much when patients come across as knowing too much....:rolleyes:

IMO they don't like to hear -
I read about "insert condition" online...
I think I have TOS

so even after you read and absorb all this info, act like you don't know it all.
but try to ask questions that lead to discussions..
mainly use the knowledge to decide if a doc or PT or DC or any therapy they suggest is any good or not.

And self care is a big thing- no single MD, DC, PTor program plan will fix you all on it's own - you have to do the home work too.

I've had good luck just saying "Can you screen me for condition X? I'm concerned I could have it." In doing so, I'm asking for their help while implying they have the expertise since I want them to screen me and render their opinion. Good reactions so far.

Just curious. Do you have Raynauds Syndrome?
That was one of my first symptoms. Years of cold hands and extremities. Developed white fingers in the cold winter months etc.Which escalated to probs with hand pain, wrist pain ( carpal tunnel), elbows, shoulders and so.
Doctors made no connections and a TOS dx took 6 yrs.:mad:
You know your symptoms and how they make you feel. Don't let doctors intimidate you.:winky:
I WISH I LISTENED TO MY OWN ADVICE!:p
Best wishes SD38

YES. :eek: This whole thing started with cold hands and a dx of Reynaud's. I don't know what to do, I feel like the arm weakness is slowly, inexorably getting worse...ugh. Will update as I see more doctors.

An interesting thought : I wonder what would happen if you ask your Drs if they access NeuroTalk????????
Just to see if they have an understanding or appreciation of what these symptoms are like for us suffering them.
FOOD FOR THOUGHT. I'm gonna pose that question to mine I think as I'm sick and tired of their dismissive attitude.
GOOD LUCK Vivi_Fruit:winky:

all of this is spot-on

srsly learn about anatomy. its taken me a year (probably bc all the pain leaves me in total head fog) to even halfway understand the mechanics of any tos, much less, my own body

raynauds is really common amongst hypermobile people

i don't have it, i dont think *knock on wood*

get your b vitamins, vitamin d and magnesium checked. they aren't the causes but deficiencies don't HELP anything.

If you suffer from Raynauds then you definately know that you have it...... the cold causes EXTREME pain and the blood supply totally switches off in the fingers and even the nose or toes. They turn a range of colours from red, blue, or white ( death white ). Its horrid. Best way to cure it is basically prevention. At all costs keep the extremeties as warm as possible in bad weather..... plenty of woolies and heat pads.