bumping up-
so more personal observances of symptoms can be updated or added.

Hmm, let's see if I can remember all the physical symptoms I've had since the start right after the car accident:

In ER:
-stiff neck
-inability to turn head and more than a few degrees any direction,
-pain in back of throat when swallowing,
-some chest pain
-burning pain going down my right arm.

The next three or four days:
-Felt like I had, indeed, been rear-ended by a Chevy suburban.
-tops of shoulders were incredibly sore,
-couldn't pick up the 5 pound water jugs I had just purchased at the grocery store right before the accident without shooting pain going up to my neck. Very uncomfortable.

For the first three months:
-gradual decrease in neck pain and shoulders symptoms, however easily aggravated by carrying too heavy of a work bag (I still carry small, light purses only!).
-Lots of scalene muscle pain, especially when lifting.

For the first nine months:
-pain levels settled down,
-however my neck muscles would spasm, locking up again if I over exerted my upper body. Was doing strengthening exercises such as push-ups and working with exercise band per physical therapy instruction.
-otherwise, upper body was okay

Then:
-Started feeling tingling in my fingers when typing on my laptop.
-Took a week break and when I went back to typing, developed pain in my shoulders, elbows, wrists and fingers bilaterally one morning while sitting at the computer.

Symptoms over the last year, in descending order:
-burning of inner wrists
-ulnar nerve distribution pain that felt like ice going up my forearms
-diagnosed with flexor tenosynovitis and TOS
-loss of cervical lordosis (curve) in neck
-tingling and numbness of my hands, fingers, and forearms
-inability to do the dishes, dropping items and loss of hand coordination.
-horrible, burning shoulder and elbow pain during physical therapy for TOS
-burning pain switched to back of wrists after six months
-still have occasional neck pain with particular movements or -picking something up that was to heavy
-negative EMG/NCS

Currently have:
-trigger points on back for sure, probably more elsewhere
-wrist pain that migrates from the front to back, though much better than a year ago
-weird finger and thumb pain
-weak grip strength, but am finally able to do the dishes again!
-back of hand and thumg pain when writing, hand pain when doing fine motor skills like fixing my glasses, old hobbies like making jewelry, and as someone else mentioned, hand pain with small objects like tweezers and fingernail clippers.
-tingling
-muscle atrophy of thumbs, hands and arms
-positive Doppler ultra sound for vascular constriction at 180°
bilaterally
-x-ray shows cervical ribs

Hi there this is going to sound strange but i am so happy to know that i am not crazy. That the symptoms i have are the same as others. I have just found this sight up till now i did not know any one with TOS so i have been dealing with this on my own and with the doctors and there are times they are at aw when i tell them the new symptoms i am having. I stared having a hard time driving about two months ago. My hands swell then the blood vessels start popping so i don't drive unless i have no choice.

Here's how I first found I was starting to get TOS, and how I improved:

TOS SYMPTOMS I had, at the beginning (several years ago):

1. heavy arms

2. tingly or numb arms, including little (5th) fingers

3. weird "alarm" feeling washing over upper body (front & sometimes back)

a. this happened more when I was constipated, I noticed, or hadn't urinated but needed to

b. this happened when I had to turn the car's steering wheel hard, like when turning into a parking lot from a street

c. this also happened when I ate sugary things

4. heart palpitations
---------------

CAUSES of my early stages of TOS were:

1. lifting too many heavy items, for work (it was a new line of work for me)

2. holding steering wheel too high up, (driving job), and, holding steering wheel with a "death grip"

3. bad ergonomics:

a. too much typing on an old fashioned typewriter

b. when I finally got a computer, I didn't realize that it was bad to have keyboard up on a desk (now, I keep keyboard on my lap, when "keyboarding")

c. when first had computer, didn't know I needed to get computer glasses (now I have trifocal power computer glasses, which are +0.75 power, and these allow me to sit about 3 feet from the monitor screen & easily read the screen)

d. didn't know I needed an office chair that was ergonomically good for me, and in my case, without arm rests. I bought a Situs office chair (many adjustments), which brand I first discovered at our local Physical Therapy clinic. See this link: http://www.situsinc.com/seatpg.htm
------------------

How I got the TOS DIAGNOSED: I saw Dr. Charles Brantigan, M.D. (Vascular Surgeon, TOS expert!) in Denver, Colorado, who had me hold my hands up (the "I give up"/Stick 'em up position), etc.

Before I got diagnosed, I had spoken with a local guy (stoneworker) who had already been diagnosed with TOS, and I noticed he had some similar symptoms to what I had been experiencing (numb arms).

This local guy was able to cancel his upcoming surgery for his TOS (that he was scheduled to have), by seeing a woman several times, who did "Aston Patterning" (a type of neuromuscular PT/Physical Therapy), that can greatly help many TOS patients.

Hearing about his good results, led me to "googling" for info about TOS, which I suspected I might have. That led me to Braintalk.org, where TOS patients highly recommended Dr. Brantigan.
-------------------

What helped me to DECREASE the early TOS:

1. Dr. Brantigan said I was on the way to getting TOS, but that I was still in the very early stages. He prescribed 10 sessions with an Occupational Therapist (OT) who happened to be a Feldenkrais practitioner (teacher).

Feldenkrais Method is a wonderfully helpful neuromuscular type of PT/Physical Therapy that is very helpful, for many people with TOS. The lady OT had a lot of experience helping TOS patients, and she helped me a lot! Her name is Charlotte Watership (not in Denver, now). Dr. Brantigan's prescription to see Charlotte, was "to evaluate workstation ergonomics".

2. People on the TOS forum at Braintalk.org, had lots of great advice, which taught me various things to try, that together with Charlotte's Feldenkrais sessions, were so helpful in lessening my TOS!

a. One of the forum people taught herself, which taught me, to put my keyboard directly on my lap, (instead of up on a desk),

b. Keep my knees a little lower than hips, when sitting, and with feet flat on floor, slightly forward of knees, and NOT to use arm rests while "keyboarding" (and no wrist rests, since they aren't needed when keyboard is on lap)

c. Get computer glasses, with power of +0.75 (or +1.00 power, for my "clip on" magnifiers, which I bought from an optometrist, but you can get at a fishing store too)

d. Use a very adjustable office chair (mine is a Situs, but there are other great brands too--Situs is not expensive, but is a really nice, good quality brand)

e. Be sure my monitor is not too high or too low, to prevent neck strain

f. Avoid sugar, which caused "flares"!!!

g. Avoid constipation & avoid putting off urination, which both caused me to have flares, like while hiking, shopping, etc.

Hope this helps! Good luck to all!

Carol (Concerned Lady)
http://cantbreathesuspectvcd.com

I have just found this site and so thankful to know that i am not losing my mind... I am at the end of the rope... I am saddened but so happy to hear that people have the same sx as me! I really thought i was losing it as did those around me! The pain is horrible.... I can share my symptoms... This may sound weird but i am trying to find out what type of medications you all are on so i can get mine changed.. don’t want to be on pain meds forever as i have already been on them for close to a year!
My symptoms are:

-Pain going down neck-shoulder-arm pit-elbow-wrist and then my fingers
-Neck and back spasms
-Pain in my jaw
-Headaches in the back of my head
-Numbness in my finger tips
- When i have feeling they are burning and hot...
- sometimes i get a static like zap in the fingers..
-Gnawing pain in the shoulder area
-When turning my neck... All of a sudden you will hear a large pop.. So loud my mom was able to hear it all the way in the basement when i was two levels above her
-Dropping things on the floor, inability to hold things in my right hand
-Stiff neck
-Sometimes a cold feeling in fingers... I was diagnosed with Reynaud’s disease a few years back... Wonder if that was a misdiagnosis.. I was also diagnosed with Tendonitis and Carpel tunnel!

Things i can’t do/or is extremely painful to do
-work
-write
-type
-cook
-blow dry my hair
- pretty much anything that involves my hand or arm is out of the question
-Drive my car : (

My doctor does not think this is TOS, even though when i lift my hand above my head during a MRI on my left said i have vascular TOS... However the pain is on the right? Does not make any sense to me..... ....

I don’t get how my doctor wont refer me on to a neurologist or a vascular surgeon... I had trigger point shots and those failed to work... So they doctor claims its nerves? Then why not a neurologist...? I am truly at the end of my rope and so thankful to find this board!

Sorry to carry on... Just so glad to have somebody to talk to!!

Dear Wildberry,

Here, in this forum, at this link (see below) are names of TOS doctors, Physical Therapists, etc., in Minnesota, etc., who know something about diagnosing and treating TOS, and/or diagnosing anything else you may have (along with TOS, or instead of TOS)!

Click on this link, and then scroll down to the Minnesota listings!:

http://neurotalk.psychcentral.com/showthread.php?t=135

Call them, and, read my message above, plus other folks' messages, for advice. Good luck! Don't give up!

Carol
http://cantbreathesuspectvcd.com

Hey there Carol...

The thing is... I have tried calling all those people and the only one still working is doctor j Ernsto... However he wont be back in the country until August 7th! I dont know where else to look on who else to see... .I am very scared and not to mention nervious about this whole thing.... My General doctor really doesnt beleive that this is a disease... So he isnt treating my pain or finding a soultion to the problem!

I am in so much pain... That he finally put me on morphine yesterday! The lyrica doesnt seem to be doing much... I just dont understand and its hard to believe the pain i have been in.... I am taking it out on my loved ones... Which i know is wrong... I just dont know what else to do...

I hope everyone is doing well.. Have a good weekend... And if you have any other dotors that work in MN that would be great!

Thank You Jacquelina

Dear Wildberry,

I hope others in Minnesota can recommend a good TOS doc to you, soon!

Here's another idea: Call TOS docs who are outside of Minnesota, like in Denver, Colorado, and ask them who they know are good TOS docs (if any) in Minnesota! If you don't get any good answers, then:

Consider coming to Denver, Colorado, where there are several very good TOS docs! You could visit several of them, to GET DIAGNOSED.

Then, you could consider whether you want to get helped by them in Denver, or not.

In case you have something else going on, alone, or in addition to TOS, ask doctors about the following possibilities (at least), and take some actions yourself too:

1) Possible Vitamin B-12 deficiency (Rose is an expert at this, and can advise you more). Get the following blood tests done right away (I learned this from Rose):

a) Vitamin B-12 blood level
b) MMA/Methyl Malonic Acid blood level
c) Hcy/Homocysteine blood level

2) Right after you get the blood drawn for these Vitamin B-12 blood levels tests, go out and buy some "sub-lingual" (under the tongue) Vitamin B-12 (2 good health food store brands I know of, are Jarrow, and KAL (don't get "time release" type), and start taking it right away.

Rose taught us that "Methyl" cobal amin type of Vit. B-12 is better than the older "Cyano" cobal amin type of Vit. B-12. You could start with 1,000 mcg (micro-grams), once a day, or twice a day (under the tongue). Rose can advise you more.

3) Go over to another forum in this website, called "Gluten Sensitivity/Celiac Disease", in case you might have a gluten sensitivity. Cara is the resident expert there, about Gluten Sensitivity (whether Celiac Disease or non-Celiac types).

a) Also read Dr. Fine's "EnteroLab" website, about non-invasive stool sample testing for gluten sensitivity.

Gluten is a protein-like substance found in wheat, rye, barley, triticale (hybrid of wheat & rye), spelt, kamut (both are ancient forums of wheat), bulghur (used in middle eastern parsely salads), etc. BROWN RICE IS GLUTEN-FREE.

b) Try going on a gluten-free, milk protein-free diet for a month. Also avoid soy, corn (even though it's gluten-free), millet (even though it's gluten-free), maybe yeast, and maybe eggs.

c) Keep a detailed food diary, to see which foods agree and which foods don't agree with you (causing worse symptoms), and do this for at least a week.

4) I have some ergonomics tips, that I learned, when I first started to get TOS. Read and try these tips (I learned a lot of them from people at the TOS forum, over at Braintalk.org --many of those people are now here at Neuro.talk.org). To read my ergonomics tips, go to webpage 10 of my website, and scroll down to Appendix D (some ergonomics tips). Here's a link:
http://cantbreathesuspectvcd.com/page10.html

5) Ask about possible Arnold-Chiari-Malformation (can be born with, or can be acquired), in which the base of the brain (medulla oblongata) partly slips down into ("herniates" into) the top of the spinal cord, causing many awful neurological symptoms! Look at the forum at this website, about this, too.

6) In case of a possible medical emergency that may be happening to you, don't hesitate to call 911 (or get to an ER/emergency room) and see if they can call in a VASCULAR SURGEON who knows about TOS (thoracic outlet syndrome), for a consultation!!

7) WHAT ARE ALL MEDS THAT YOU ARE TAKING? I'M CONCERNED WITH POSSIBLE ADVERSE (BAD) SIDE EFFECTS!

8) ANY MOLD EXPOSURE?

9) ANY CHEMICAL EXPOSURES? (WORK, HOBBY, INDUSTRIAL, ETC.)

10) ANY SURGERIES? ACCIDENTS? INJURIES?

Hang in there, and don't give up! There is hope and help, and people at this forum will be along, to give you more advice!

Carol
http://cantbreathesuspectvcd.com

Wildberry,

have you found any more docs in MN? If so please share any names you come across. Thank you!

If your doc does not believe he needs to read Peter Pan...J/K
If TOS was NOT a condition there would NOT be a diagnosis, nor information and papers on it, mor surgeons who perform surgery on it, not physical therapists and doctors of osteopath and chiropractors and...
Nor would the 50 State's put RSI and TOS catagorized in their Workers Comp laws.