[lailavia]

i AM SO FED UP i COULD SCREAM. I just got off the phone with my neuro who gave me no advice and had to "run" cause a call was coming in , I guess from someone much more important than me. I knew I shouldn't have called. I burst into tears. I just need someone to tell me what kind of doctor to go to for help here! I was asking his opionion!

Long story short: I have dx of fibro and cfs, and POTS, and also being tested for adrenal stuff...and I have some bad disks causing leg pain. Last fall I noticed my arms becoming more fatigued doing "over the head" activities. Then one day in December I had a sudden first time bad flare of pain in left arm, shoulder neck area. My neuro did an mri of c spine which showed sligt herniation and mri of thoracic area to rule out TOS. Then the pain kind of diminished....but has to this day flared up a bit and sometimes worse on left side,,,,especially if I sleep on it. My neck pain has gotten worse and tingles/vibrates sometimes. Also had a real vertigo dizzy feeling when severe pain attack happened. So now my arms are getting more and more fatigued (both) I cannot do repetative things at all, I can barely whisk an egg. or brush teeth, etc, . My neuro did do emg and ncs studies on my arms which were normal. He doesn't think my neck disks are causing this. Something weird is going on. He said something about getting punch biopsy from the neruo i saw at JOhns Hopkins re: my shakes (another problem) and I said would that affect my whole body? I have some kind of foot neuropathy. He said MAYBE> So I said should I see anyone else about this like an ortho doctor or neuro surgeon and he did say maybe we should consult about this again....but acted like he had done all he could. He did manage to mutter out ortho doc as he was Hanging up on me!!! I felt very belittled. I was asking him for his opionion, I even said I know no one else to ask about this. and he acted like I was just taking up his darn precious time. This was a 3 to 4 min talk. I don't like going to him but the 4 other neuros were even worse. I just want someone to figure this out@!!!!!!!!!!!!!!!!!!!!!!!!!!PLEASE HELP

[Chemar]

just a thought........I dont know if you want to try a different approach, but maybe a D.O. or and Integrative Doc can help beyond what the neuro can

so sorry you are going through all this frustration with getting the help you need. It really is so sad that so many docs seem to take this *shrug* cant help you anymore attitude

I do hope you find someone competent to help you

[MissyGirl]

Thoracic outlet syndrome????

[Chemar]

The TOS Forum is down a bit. Sorry I thought you were looking more for a doc to look at the composite spectrum off autoimmune and other issues you mentioned as well as the TOS and I have always found the ones I referred to have an "out of the box" way of thinking that sometimes helps diagnosis and most effective treatment

Here is the link to our TOS forum
http://neurotalk.psychcentral.com/forumdisplay.php?f=24

[lailavia]

for the kind responses. I have always thought of TOS, but apparently they (2 neuros) don't think that is it from my mri. I have researched it. Heard it was a difficult dx. I was so angry mostly because he just didn't seem to care or comprehend how awful this is for me. and to just rush me off the phone...maybe he couldve said, if you want me to help you please make an appt,.....or put the other call on hold rather than dismiss me like a nothing, nobody.....So do I go find a Tos Dr? I am having an epidural injection Friday for the first time for my leg pain, I will ask them too. And as I was leaving my last appt, the nerve conduction study one, I asked about my arms.....he just sort of ignored me....said to come back in 3 months....why I have no idea...he does treat my migraines but they are well under control with topomax. Very arrogant type. I guess I could make another appt. with him and bring hubby along...

[Jomar]

Most average drs aren't really "up" on TOS, or they have a bias against it from minimal knowledge on the subject.

The MRI pretty much will only show if the c spine is or isn't the cause of the arm pain or if there is a extra cervical rib or large bony structure causing the compressions. It doesn't show TOS itself as it can be a soft tissue problem.

You might look thru our stickys on the TOS forum- the second to last post has a "our symptoms " thread link that might help you see what many of us actually have symptom wise - the websites about TOS don't list nearly all of them.
But what you wrote about your arm/ neck pain sounded very familiar.

we have a TOS drs list sticky too.

I had the best help from an advanced PT guy and the very good chiro that I was lucky to find.