[rose_thorn98]

I saw a new neurologist today. He actually spent 1 1/2 hours with me!
He ordered me the paraneoplastic panel, glucose tolerance test, and the anti mag test. Will do that day after Thanksgiving.

He basically said that I have chronic neuropathic pain and erythromelalgia (this is his "label" for now). And that at this point can't call it sfn. Did say however highly likely that with time may show positive for SFN biopsy. Wants to do biopsy and EMG again in one year. He said that they may not have a diagosis for me yet, but that with time I will probably show something. He was honest and assured me that I was not getting the blow off, that he will keep monitoring me. He referred me to to pain specialist, and pain management program my HMO does (which I've heard people rave about). He said that he feels that at this point I need to get adequet pain control and also emotional support that focuses how who to live with chronic pain. I agree with that! He did say that what ever I have is not legnth dependant.

I think that at this point I may have to accept what he is telling me. He is the 3rd Dr. to give me this "we don't know yet, but it might evolve and then we'll know more" speech. I'm just getting to a point where I want to live my life again instead of being consumed with "what's wrong" thoughts always in the back of my mind. At least if I can get some good pain control I'll be able to live as my old self again. I'm going to wish for the best.

[dahlek]

Curious, cautious and careful. Not to mention, caring?
That he's going to do the immune tests? Says a LOT!
Must warn you that some times, the worst results don't show up until after a year. [Sigh] Keep faith and keep this docs curiousity by asking INTELLIGENT questions... You've got a mob of good folks here to learn from... read past posts and then pick brains? Read the stickies and learn from that all too.
I usually only Cite NIH, and major university papers tho... adds credibility to YOU that you've found them and read them? Also that you understand them! [often a harder task for sure]
Keep at IT and keep faith! Listen to yourself! Fit yourself into where you mite not be the square peg in the round hole.
Hoping and hoping HARD for you! - j

[Dmom3005]

Good luck on the testing.

Donna

[daniella]

Wow that is great. You have a doctor who spent time. I have not had any of my doctors spend an hour and half. Some don't even spend 15 min. Though he does not know what is going in at least he is testing you for more to rule out. I remember when Iw as going through all my dx testing and there was and still is a lot of unknown I feared the worse. The more I focused on the worst the more depressed and harder it was to cope. Now I try to stay in the day and do the best to get through each day. Though it did not take away the physical pain going back to the psychiatrist and also I recently did biofeedback was a positive thing for me. It has helped me cope better with everything though I still have my days. I encourage others who have health problems that are chronic to go too. Hope the testing tomorrow I think goes smooth

[rose_thorn98]

Thanks everyone. I must admit that while I wait for the newest test results I'm a bit nervous....about results of the paraneoplastic tests. I know it is extremely rare to have, but still not fun waiting. Yes, I'm glad to have found a good Dr. Actually the last one was good too...he was the one who referred me to the latest. I must be Thankful to have some good Doctors who seem to be trying to help. When they can't find the answers its easy to think they just don't care or aren't trying hard enough. But really, I think alot of the issues with nervous systems disorders are tricky. I must remember that I'm getting good care and that although we don't know what I have, we do know what I don't have. And once I find out the latest test results I hope I can relax and know that at least, I don't have something serious....just pain, and we are working on that.

Thanks to all here.....you are the best support I've gotten anywhere.

[dahlek]

Essentially, do you WANT to know what you're dealing with? or put your head in the sand?
Before after and during my diagnosic processes for an autoimmune neuropathy, I saw SIX different neurologists in different practices. Good thing I live in a large metro area? One doc actually SAID I could NOT have autoimmune neuropathies and being treated because I wasn't in a wheelchair yet! I replied that: Ever occur to you that I wasn't in a 'chair' because I mite have been treated IN TIME? That doc has since been publishing papers that are showing a change in attitude along these lines- mis-diagnosis or under-diagnosis. WOW.
Remember the "FEAR" is worse than the reality for 93% of us. The other %? have their plates full, but with most AI neuropathies, at least we've got our brains! Because we still have brains? USE THEM! I've challenged my docs and I still challenge them! I have to! To not? is to give in and cave in!
GET DIAGNOSED? Then deal with it! I've done that with several other autoimmune diseases since the Neuropathy and it's stood me well.
Like you? I didn't ask for this, but I've got it. I am going to make the best of it all that I can. And I'm still working on it! But? I respect that FEAR, for sure.
IT takes a heap of fortitude, strength and faith to get thru this all, but YOU CAN come thru it speaking in complete sentences. That's why we are here.
Hope and hugs 's Tell us more, we are here! - j