[EE03]

Hi all,

I now have this condition too. I post on several other boards. I went to a neuro who has treated me in the past regarding this which started after I woke up from a nap with my leg completely numb. Thinking it just was asleep, I got up and stood on it and when I tried to use it, it buckled right out from under me. My PCP sent me to a neuro...fast forward to the followup after the EMG/NCV, and the doctor says that these symptoms along with the pain I reported to him in my feet, lower legs, and hands are all due to fibro! I couldn't believe this in light of the diagnosis from one of his colleagues in his own group who did the EMG and the diagnosis clearly states PN and Lumbar radiculopathy. Going into the EMG, this neuro said he felt my test would be negative. It wasn't, be he didn't discuss any of my sysmptoms other than to say its fibro.

So, I get the buning pain in the hands and feet, the feelings of being stuck with a gazillion pins and needles, and I get really strong shooting pains which sometimes linger. I also seem to be having a foot problem at times as it seems my foot doesn't grab the sole of the shoe. I'm not sure if that is related to this or not.

I wrote a letter to the doc and I haven't heard any response. I pointed out that we didn't talk about this dx. I really didn't think I'd hear from him or his staff, but I'm still dumbfounded.

Any advice/input would be greatly appreciated. EE

PS: they did a lot of bloodwork, screening for a cause and that is negative at this time. Diabetes isn't the problem, thank heavens, and my blood sugar readings are all good.

[nide44]

Glenntag may chime in in this (I hope) but I'd
really go with the:
"......the diagnosis from one of his colleagues in his own group who did the EMG... and the diagnosis clearly states PN and Lumbar radiculopathy....."
I'm of the opinion that lazy docs Dx 'fibro' when they
don't want to go any farther, and are hesitant to use 'ideopathic'.
'Fibro' is the new'fad' disease, pushed by the makers of Lyrica, on TV.
I'd get another opinion, too.

[Megan]

Hi Nide44,

I don't quite agree about Fibromyalgia being the 'new fad' disease because of the Lyrica ads. You are looking only from your perhaps parochial perspective of whatever country you are from, but there are many other countries who fortunately do not have drug companies pushing their drugs down people's throats via TV advertising, yet 'Fibromyalgia' is still as prevalent and as frequently diagnosed - rightly or wrongly!

[DejaVu]

Bob,

I am very surprised to read a comment like the one you've made re: fibromyalgia, esp.written in this forum. In 2009? Wow!

Fibromyalgia research had started at least as far back as the 1980's, Bob. This was long before the Lyrica ads. I have known some of these very highly credible U.S. researchers very well. Fibromyalgia was taken very seriously then (1980s), by those "in the know." It is taken even more seriously now, and on an international level... in 2009!

Fibromyalgia is neither "new," nor a "fad" disease.

It's extremely unfortunate that people not educated in the real facts about fibromyalgia feel free to perpetuate myths, as though they are an authority on the topic. These types of comments are very demeaning to those suffering greatly with this often seriously debilitating and very painful condition.

When individuals do not truly know the facts on a specific condition, why comment in an uniformed, negative fashion?

People only harm their very own credibility with these types of comments.

Do doctors sometimes make misdiagnoses? Absolutely!
However, a misdiagnosis does not negate the existence and credibility of the condition referred to as Fibromyalgia.

[DejaVu]

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!]

[nide44]

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.

[EE03]

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

[pabb]

Originally Posted by nide44

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.

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......

[Hope15]

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....

[Kitt]

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