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-   -   Newly diagnosed and clueless (https://www.neurotalk.org/peripheral-neuropathy/91233-newly-diagnosed-clueless.html)

EE03 06-28-2009 01:44 PM

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

DejaVu 06-28-2009 03:02 PM

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

mrsD 06-28-2009 03:36 PM

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.

EE03 06-28-2009 06:45 PM

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

daniella 06-29-2009 06:28 PM

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

EE03 07-06-2009 11:33 AM

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...

mrsD 07-06-2009 11:47 AM

Quote:

Originally Posted by EE03 (Post 533511)
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.

EE03 07-06-2009 08:55 PM

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...

diagnonsense 07-06-2009 09:43 PM

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)

daniella 07-08-2009 05:50 AM

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


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