Jo... I truly hurt for Dena and others when the doctors do not even give them a ample pain releif and not listening to what is really going on symptom wise or just unable Dx properly... all of us here know what it is like walking the halls even when we do have some meds that are supposed to quell the pain lif can be hard! She did say about having the EMG scheduled, there is a good chance, that her irregular nerve synapse will show up on that, yeah I know only 50% of TOS does, but a good place to start.
Dena, you found a good place, to ask questions, I am surprised there are not more members answering in... usually it is a plethora of info. Besides it is also a good place to vent... everybody here has been there, it is a nasty disorder. Amazing what people will say, but you look fine, there can not be anything wrong with you "as inside you wither in agony"!

about replies - I think some of it is the holidays and the cold weather- slows us all down a bit I think.

I appreciate being able to come back in here and see that someone out there understands and cares about my suffering.

When you all respond I read every detail...and sometimes print it out. I am starting a binder with all of my symptom related stuff. I'm sure it'll grow huge since I have only been experiencing this new level of symptomatic pain for a week. (In other words, I didn't get my *** in gear to find out the problem until the pain was so severe that I had to do something). Already, I have printouts, doctor bills, MRI results, Prescriptions and-over-the counters tried/failed. I have learned from reading the other posts that it is never too early to start compiling information in an effort to help myself.

Looks like I am going to have to make it through the weekend with just the Darvocet. Tuesday is the EEG and NCS test. I will probably call the lazy good for nothing clod to get something better after the testing, so he doesnt think I am some sort of seeker.

It sux that anyone would even consider that I was drug seeking. I do (did) NOT go to the doctor unless I was super sick, I don't even have a general practitioner. If anyone checked my prescription records, they would see that I am not a pill head -yet
I am in so much awful pain and it feels like the doctors are laughing at my "tingling, burning" sensations like a child with a foot asleep. If they only knew how hard I cry through each episode...maybe they would help me.

I am rambling. Today has been even worse than the previous 6. I will check in later. ty again to all who are listening and helping as i try to get thru this initial dx phase.

btw, I made an appt with a Dr. Thompson from our list of doc's. When I told his secretary the symptoms, she chuckled kindly and said, "sure sounds like TOS, 'course I'm not the doctor". He is pretty booked up. My appt is in a month.

Dena,

I am trying to stay away from sitting near the computer as the positioning is very bad for me, and I "got" TOS from overwork on a computer at work.

But, having said that, I've got this saved for all new people...

Here's what I used to post all of the time:

I don't think any of my tests came up abnormal except the scalene block was positive for taking away the pain - and the high, high pain was the primary symptom - and, blood tests, obvious color changes on arm skin, loss of use of the hand / arm, temp changes, and where I pointed out the pain locations copied known TOS patterns, and differing blood pressure from one arm to the other. So the docs put all of those facts together, with the absence of any other known diseases, and concluded neurogenic TOS.

TOS is a diagnosis when ALL other testing does not show an obvious orthopedic or other reason for all of your symptoms. You may test normal to ALL of these tests but still have neurogenic TOS. (Vascular TOS alone is only about 5% of all TOS cases, and it is seen by the abnormal vein imaging.) TOS is a diagnosis when you have ruled out all other problems, because if you do not do the foundational TOS tests to rule these out, then you might have missed an obvious tumor, etc., which could be life-threatening. Yet it does not mean that TOS is merely what you call it when you are done with testing. Testing is extremely important. Normal results in all, can still conclude TOS, if the proper symptoms are present as a whole. There is no single, one-shot test for TOS. You can't usually "see" it.

I am not a doctor, and this description of tests is just "laymens' terms."

1. You should have ruled out any rheumatological or immunological conditions by seeing a rheumatologist and having these blood tests run. Sometimes they will run a brain MRI to rule out MS or other copycat conditions.

2. Neuro / ortho / vascular doctors do MRIs of the neck, brachial plexus, shoulder, hand, etc., looking for any obstruction or strucural abnormality. These MRIs can be run with fluid, and may or may not have your arms in differing positions. Mostly, these are for finding any arterial or vein blockages.

3. Xrays are also ordered of the spine, usually in the beginning, and a few TOSers will have additional cervical ribs, but many do not. "Extra cervical ribs" or "protruding cervical ribs", etc., are the terms to listen for.

4. Neuro docs do EMGs and nerve testing, including SSEPs, each one believing that only their way is the right way. Usually, it is not always going to show anything. You want to ask if they test up by the neck for the C-8, because if this is slow, the C-8, it tends to show TOS rather than cervical radiculopathy.

5. Doppler tests are like sonograms of the arm to see if there are any blockages of blood flow. You can have neurogenic TOS and still have vascular / circulation type symptoms, but these may not show up on this test. Blockages must be treated usually by surgeries, ASAP.

6. MRAs or MRIs with fluid involves cut-downs along the arm to track blood flow, as you sit or stand. In my case, my nerves were wrapped around my double veins, so we were unable to cut-down all the way up.

7. 3d MRAs (or is it MRIs? I always get this one wrong.) By Dr. Collins shows different angles of the brachial plexus at such a high resolution that doctor is able to "see" compressions, impingements, etc. However, most of us do not get this luxury. (I think the cost is $7,500 right now?)

8. Scalene block - if you feel relief for a brief period of time, this is positive for surgery.

9. Thyroid issues - many TOSers are hypothyroid. Some show up easily on a blood test. Others, are not shown on a blood test. Some are called "Hashimoto's thyroid" such as mine. Mine were based upon symptoms, rather than numbers on a blood test. They incuded: dry hair, or slow growing hair, depression with no real situation or depression that has gone on a long time, nails that don't grow or are brittle, dry or flakey skin, sleeping 10 or 12 hours or a whole weekend like I was and still tired, not being able to sleep at night, tired when forced to wake up, (once I started the thyroid, I slept from 11 AM to 7 AM without problem), slow bowels, like not moving for a week, (not really weight gain or weight loss, though, this wasn't about being fat, but about not good body metabolism.) So anyways, this is a subject for you and your doc.

If all of these tests come out basically normal, this leads to discussion of TOS as the culprit. It is especially hard to tell the difference between cervical ortho causes and TOS, and sometimes shoulder and TOS. But you must go through time-consuming testing to find out all of the results, because if you simply proceed with an ortho surgery, your TOS pain can go through the roof and you can have unexpected complications, so it's rather serious to proceed now with great caution, whereas the work comp ortho surgeons love to "cut and run!"

We have a ton of articles post on the upper left hand corner.

We also have listed some of our docs we have seen, on the upper left hand corner. In my opinion, most doctors ho say they know TOS can NOT diagnose TOS, and I went through over 10 orthos / neuros / vascular surgeons who did not diagnose me, and it wasn't until I flew to Denver and saw Dr. Annest that I got a diagnosis, and then most of these docs said "oh, that's what I thought, too, but didn't want to be the one to make the diagnosis."

Pain control is another big fight.

Be very wary of chiropractors who say they can "cure" TOS. Do NOT do any physical therapy or treatment that hurts you, or tries to strengthen you. TOSers (for the most part) cannot do strengthening exercises, cuz that causes swelling, which is already a problem.

The best physical therapy that I know of is the "Edgelow" system, he is listed in our doctors list in Berkeley CA. Many P/Ts do his system. You can get it via mail, too.

Try to figure out how you got TOS, if you do get diagnosed. Were you in an accident to the collar bone area? Or, were you doing a job that had a lot of repetitive hand / arm movements over an extended period of time? IF you can't say why you got TOS and you're working, presume it caused the TOS, and make sure to get an attorney consult and proceed with a claim. Do not wait, no doctor will take care of this aspect for you. The onus is on you to pursue your work comp benefits, which, sometimes TOS is 100% disabling conditi

Dena- alot of people on here love heating pads and/or hot tubs....

I'm sorry for your truly awful experience with the doctor today. I likewise think it is a great idea to check the sticky at the top of the forum and see if there are any docs near you. I hope you can get SOME sort of relief from someone.

About the "seeking..." I"m pretty sure most people in here have been through that once or twice. Walking into the ER, I present as a fairly healthy looking male with some STRANGE symptoms (esp. if they don't pay close attention). I know exactly what you are talking about, and how personally hurtful it can be that someone would suggest that. Hell, right now, I think I'm going thru that with my pain mgmt doc.

good luck, and I hope you find some relief this weekend.

Hi Dena,
I'm sorry that you've been having problems and all but as others said, you found the right place.

I'm glad to know that you've made appointment with Dr. Thompson. I tried to get to St. Louis and see him in person a couple of years ago from "Japan"
But because of medical fee (my insurance doesn't cover for oversea medical attentions) and time (he told me to stay there for 1 month!), I couldn't make it. I mean I had to give it up.
However, as I was exchanging e-mails with his secretary (a nurse ?!) , I found that he was pretty decent and had enough knowledges to deal with TOS (my treating doc here thought the same way).

Good luck and stay warm
P.S. I used to go to school in Kansas City, Mo in the mid 90's and visited in St. Louis while living there. I went to see my extended family in KCMO about a month ago. It was already cold (for me) there at the time.

Dena.....

Run, don't walk to another doctor.

My hope for you is that it is not TOS. I'd love for you to report that it's a torn rotator cuff with a lot of swelling, you can have surgery to fix the problem, and get on with your life without our bright and smiling faces

BUT..........if that idiot doesn't even know what TOS is (which is evident from his claim that there is only pain in one position (doh !) than he is NOT QUALIFIED to say that you or do not have TOS.

I had the MD at my local pain clinic do the same thing to me......said it was not TOS because TOS patients only get pain in front of their collarbone, not in back where I feel it most.