Newly diagnosed and clueless
 

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! :eek: 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.

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.

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!

Fibromyalgia is not "new fad disease!"
 

Bob,

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

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.

EE03, I hope you can obtain clarification and help!
 

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. :confused:

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!:hug:



[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. :hug: 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....

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.

:hug: EE

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

EE... I think looking at the new information out there on Fibro may help you figure out where you are with this problem.

Basically Fibro is triggered by other issues, trauma, disease, PN, vaccines, etc.

I have a thread on Fibro forum that contains the distilled newest information on this that I obtained from a medical conference in 2007. Dr. Clauw...a prominent researcher gave the lecture.
Here is the thread:
http://neurotalk.psychcentral.com/thread20030.html

It is possible you have real nerve damage, which may have or may have NOT triggered Fibro. Not everyone who has pain has fibro. 2-7% of people may get it, and it tends to run in families, and is more common in women. Although some men do have it too. There are no tests that I know of to diagnose fibro. It remains an impression by the doctor (not unlike ADHD in kids).
So being a subjective diagnosis it places the patients in a tough spot.

You can Google Dr. Clauw...he is on the net on many fibro web sites now. He is very intelligent, and a very good communicator.

Mrs. D,

I was previously diagnosed with fibro a couple of years ago. My neuro knew this. The EMG clearly shows peripheral neuropathy and lumbar radiculopathy which was done by his associate. That is the confusing part since the test record indicates "abnormal results" and his written report also indicates that. They use a computerized system and scan all handwritten documents in. I have copies of both.

I know what fibro feels like and the numbness and burning pain along with the shooting pains aren't from fibro. They are from the PN and indicative of nerve pain. I though they might be related to disc issues I have but since the EMG/NCV I realize they are from the PN.

It seems as though my regular neuro just lumped these symptoms into my fibro and doesn't want to deal with the PN. He said to me before the test that he suspected my results would be normal and when they weren't, he dismissed them, which I think is wrong and my PCP also thinks is wrong. It doesn't make any sense to me :confused:.

Take care and thanks for replying. I hope I haven't caused a lot of confusion as sometimes my posts aren't clear due to my meds. EE

Hi. First as someone who is the queen of many opinions I think you should get another one too. Your doctor should not care as different views or approaches can help. I had seen a few previous pain docs before this one who has really been the best so far and it is because he is willing to look out of the box and also work with me. I know back awhile ago though I have PN and RSD they suggested I may have fibro or myofacial pain. I do not but anyhow I guess what confused me is lets say you do have fibro in addition to the PN is the treatment just the same meaning isn't it about meds though I guess some meds can be better then others. I just know many who are on Lyrica don't have fibro. I am not sure but a past doc stated that many with low d have fibro so looking at that as well. I also wonder if you had tests for auto immune because from what I read a lot of the symptoms are similar as well. You may have stated this sorry. Feel better and I hope you get some firm answers,direction,and relief

Updating this situation, I don't think writing a letter to neuro #1 did any good. My PCP decided to refer me to another neuro who asked to see the records before they will make an appointment. If this neuro doesn't see me, then I'm probably going to have to travel to get treatment. This doesn't make any sense to me :confused: but then I'm only the patient with tons of questions and no answers. This is frustrating...

Wow...that is really a bummer. It almost makes me think that a "fibro" diagnosis, is an impediment to further medical care?
I hope that this does not happen to you, and that your consulting doctor is open minded and helpful.

Some doctors don't take new patients, unless they think they can help them, etc. They may be very busy etc. I would rather think that is the problem rather than prejudice towards a tentative diagnosis.

mrsD, I hope its not an impediment. The pain is completely different and I don't understand why any doctor wouldn't see that. Anyway, I should know something tomorrow. Wish me luck...

I really think once any doctor see's that a previous doctor put "fibro" on as a diagnosis, that they are going to say that you have fibro.

What you need is a clean slate.

Don't mention fibro. Don't sign releases.

Go with a different health care system. Not in the same hospital system.

Only then do I think you will be able to shake the fibro MIS-diagnosis.

I don't think you sound like a fibro patient at all. We do have a gal on here that does, and you don't.
You don't have the unexplained pain. (which is a cornerstone of fibro)

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

I sincerely appreciate everyone's thoughts on this. I still don't have an answer and will probably call towards the end of the day. It shouldn't take them too long to decided if they'll see me or not. :hug:

Your neuro should not be threatened by another neuro's opinion. If NCV tests show PN than it is safe to say you have PN. Often, PN starts in the smallest nerve fibers which is not picked up well on NCV. If you have FM, then chances are your CNS will have a hypervigilant state to pain signals. So if PN is sending more pain signals to your brain, then due to FM, you will hurt "more." There is evidence that FM patients may have more substance P in their CSF. This is evidence that FM may be a "real" diagnosis, and not the hypochondriacal malady that half of doctors think it may be.

MdotDdot,

The test results show PN, lumbar radiculopathy, and numbness. I called the second neuro's office and they agreed to see me "only for a second opinion" so I told them not to bother as I need someone to treat me. Its back to my GP for other suggestions. This is crazy!!!! Its looking like I'll end up at Mayo again.

Thanks for posting the information you did. I really didn't need anything more to validate my pain, but if it does that too than at least something good is coming from it.

I finally got an appointment with a neuro who is willing to treat. It's about 3-4 weeks out, but its better than nothing which is what I had previously.

Thanks again to all who've posted :wink:

Good luck EE... I hope it goes well for you.

Good I hope you find relief and direction. FYI you may want to call for canceled apts. I have done that before and have gotten in month early before. I think the office staff gets sick of me and my daily calls.