Help! No diagnosis

I have been having pain and numbness in my arms and hands since August 29th 2008. It started after some dental work I had done a few months prior that changed my bite a little bit. On August 8th, I started feeling a weird nerve, deep seeded aching that was always there in my mouth, Then 3 weeks later, I started feeling alot of fatique, burning and numbness in my face, but the nerve pain went away. Then 2 days later, it spread to my arms & hands, then to my feet & lower part of my legs.  I then went to the Er since I didn't know what was going on & they did nothing for me.  Since then, I have seen 3 neuro to get opinions & no one knows what this coud be. I have had several tests including MRI of brain and neck, CT scan of brain and neck, 2 EMG & nerve conduction studies, Extensive bloodwork, & xrays of neck in flexion and relaxd, echocardiogram, carotid doppler, vision & hearing tests for MS. ALL TESTS WERE NEGATIVE. I have had spinal fusion at the C5/6 area in 2002 and I spoke with my surgeon & he looked at both MRI's & he says the surgical area is just fine and nothing is pushing on any nerves.   Nothing turns up anywhere. The Neuro have no explanation for my symptoms. The numbness in my arms, hands, and feet are constant and the pain radiates on both arms like a vise wrapped around my arm and it feels really cold. It comes and goes and it is on both sides on the outside of my arms. My legs are numb form the knees down and my skin is very burny. The more I use my arms and hands, the more pain I get. Its difficult to just do everyday things, like wash my hair or reach up to get something out of a cabinet. I need some advice on what this could be or where its coming from. I can't even work right now due to this cause I'm a dental hygienist. It has reallly taken its toll financially as well as physically and mentally. I wake up with this and go to bed with this. Why is this not going away. HELP!! I need an answer. Thank You

[buriedinfur]

You know, the more I look for answers and the more I look for support and to support...the more people I meet that are in this 'undiagnosed' boat. And unfortunately, once they've run their tests, they usually don't want to offer ongoing support beyond that.

I suppose a good deal of it is that they just don't know. Not that it makes it any easier. If you have a 'label' it makes it easier to explain to people and get help.

All I can suggest is that you ask about the anti-seizure drugs like gabapentin to suppress/manage some of the symptoms and look into good health things like diatary/exercise/stretching etc. I mean, they don't 'fix' it, but they help you manage it.

And join a support group if you have one locally and are comfortable with it. You don't need to have a diagnosis to have people validate your pain and stress, and there are things you can do to help reduce it. Therapy too if you can manage it - this helped me bunches.

I hope that you get the support and hopefully eventually some answers that you need. In the meantime don't feel that your pain is any less valid than someone with a diagnosed condition.

[Fenwaysmom]

I may finally have a diagnosis.  I had some more tests today and I may have Thorasic Outlet Syndrome. Based on the tests they did on the arteries, I may have it. The technician couldn't say for sure because he can't, but he said it looked abnormal and he couldn't find a pulse when my hand was raised all the way and the pain got worse. The Dr still needs to read the results and my appt isn't until next Friday. I am now very anxious about this. I wanted a diagnosis, but I'm not sure I wanted this one. I'm trying to get her to move me up to earlier in the week to see him and she said she would have him read the test tomorrow and if he felt that he needed to see me sooner, thart she would call me.  If it is this, HOW DO WE TREAT IT, THAT'S THE QUESTION!