I am sorry you have encountered such a difficult time in trying to get help!
This lack of help can be so incredibly frustrating, especially when in pain!

As you have pointed out, it is hard to understand why your doctor would not honor the findings/opinion of his colleague on the completed EMG/NCV testing/diagnoses.

Did the neuro and you have the same test results copy? I cannot believe just how many times the specialist actually gets the wrong report; the report read is often for a different person!

It would be great if this could be sorted out with your current doctors.
Yet...if not, then you need to look for further clarification.

Do you have your own copy of your testing results?
I hope so! If not, can you obtain this?

Did you write your letter of concern long ago? Some practices take a long time to get to written correspondence. The correspondence considered "non-emergent" by someone in the practice gets delayed sometimes. However, only you know just how long it has been now!

If this cannot be clarified with your current doctors, is it possible for you to take the EMG/NCV findings to a different neurologist?

If the nerve studies show neurological conditions, it would be nice if you could skip the pain and the expense of having to repeat the studies...and simply take the report to a new neurologist.

How do you think you might best obtain the clarification you need?
Please do let us know how you are doing!



[I have been fortunate that my neurologist is also board certified in performing the EMG/NCV studies and does them himself! He does not have to rely upon a tech trying to find what (he) the neurologist is most interested in looking for!]

Megan & DejaVu,

Everyone is entitled to his/her own opinion.

Any malaise that is diagnosed entirely on subjective analysis
and not on laboratory test results is subject to misuse.
There can be no denial that some docs use these maladies/diseases as a grab-bag and alternative to 'idiopathic' to dismiss patients they do not wish to take the time to properly diagnose.
It gives the patient something other than 'no cause found'.
My opinion is based on this occurring too frequently in the USA,
from reports/posts that I have read over the years, as well as drug co.'s pushing the meds and causing hypochondriac attitudes in the suffering public)
Again, everyone is entitled to his/her opinion.

To all who have responded, hopefully this will clarify.

I have copies of all three visits, the EMG/NCV, and the labs. I wrote the letter and mailed it a week and a half ago. I talked to the doctors staff about the situation as my PCP is aware of the situation and sent over a referral for me to see the neuro who conducted the test. They are reluctant to let me see that neuro until my neuro decides if he'll release me to do so. I am trying not to cause any ill feelings here as the neuro I have a longer relationship with has been really good to me, up until now. So thats why I have written the letter.

At this point, I think I need to see another neuro as the test results are quite clear. I am diagnosed with FMS, but I know that what I am feeling is not related to that. I also took copies of these records to my rheumatologist last Friday. I hope he'll read this and have something to say about it.

Anyway, I'm really in the dark here and I'm trying to handle this in a way that I won't burn any bridges with this doctor, but maybe thats inevitable, I don't know. I'm feeling a little insecure as a result of all of this, and unsure of what to expect from this condition. When I read all the info about the condition, its pretty scarry.

Thanks to all of you for your replies. I really do appreciate them. EE

yes, anyone receiving this dx, without a thorough work up has been ...hmm miss treated.....and perhaps misdxed......as far as the studies that show the brains are altered, well guess what? pain will do that to ya...ie central pain sydrome......

Can someone please tell me the symptoms one can have with fibromyalgia? I always thought it was felt in the muscles? Can one have nerve pain/symptoms as well? Thanks....

Here is one site. Click on:

http://www.mayoclinic.com/health/fib...mptoms/AR00054

Here is another. Click on:

http://arthritis-symptom.com/Fibromy...toms/index.htm

DejaVu,

Thanks for your response. I will update this post as time goes on. I will be contacting another neuro this week and get an appointment as I really need someone to address this in detail and give me some treatment options.

EE

Yes, please do! Interested in how this goes for you!

I do agree that some doctors will just follow what the others have said and sometimes a new look or approach can make a huge difference. My recent pain doc had a different approach and would not just go with what the others had said. I would just tell the new doc that before you tell them what the others said you wanted a fresh look and what they feel. Through my many docs I had one throw out the idea od fibro or myofacial pain but I do not have that at all. If I would of stuck with him he would of treated me for that. I am not saying this is for you but just a thought I guess. Feel better