Update on me... I finally have a referel to a Rheumy

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Regular Member

Date Joined May 2010
Total Posts : 200
   Posted 8/21/2010 12:27 PM (GMT -6)   
Hi everyone. :-)

I had my follow- up with the neurologist yesterday. He didn't say much- basically everything they already told me over the phone. They found no lesions, so sounds like he is ruling out MS, and i tested negative for autoimmune diseases like Lupus and arthritis. He asked if I want a referrel to an ENT for a cyst they found in my sinus cavity but I declined for now. I am more concerned about the pain and he said the cyst is not a concern.

So he went ahead and referred me to a Rheumy and I am waiting to hear from them to schedule an appointment. I have heard good things about this guy, so hopefully it will go well! What should I expect at the appointment? Will he do a tender point test that same day if I request it? I really don't see any reason to wait any longer for it.

I was kinda hoping the neurologist would have known how to do the test, but I guess not. It sounds like he doesn't know much about it. In fact, he told me that chronic myofacial pain syndrome is another name for Fibro.... um, I think not!! i didn't tell him I read articles on the internet, but from what i have read, they are different... myofacial pain is trigger points, and Fibro is tender points. Does anyone have myofacial pain, btw? I am wondering if I will get checked for that too.

Now i am just nervous that they still won't find anything wrong with me and I will feel like I am just going crazy. But it will be good to see if that is what I have or not.

thanks for your patience with me as I sort through things here on this forum!

Forum Moderator

Date Joined Apr 2005
Total Posts : 17057
   Posted 8/21/2010 12:45 PM (GMT -6)   
You are not crazy...even if they didn't find anything wrong!  Don't ever tell yourself that.  You know what you are feeling!
Why don't you go into Fibro 101 to the link that has a journal.  Print out the journal.  Then there are links that show you how to describe your pain accurately.  Print that out.  Then keep a journal of the pain  you are having and what you are doing when you feel the pain.  This will really help the rheumy in figuring out what is going on with  you!  Let us know what happens.
Forum Moderator/Fibromyalgia
God does not give us a spirit of fear, but of power and of love and of a sound mind. 2 Timothy 1:7

Regular Member

Date Joined May 2010
Total Posts : 200
   Posted 8/21/2010 1:03 PM (GMT -6)   
I guess I just say that because if I don't have Fibro, does that mean the pain is from depression or stress? (I don't feel like I have depression, but I guess it could be from stress.... even though I am not anymore stressed than I have always been)

or, maybe it was too early for me to even have the blood tests to begin with? here, I am getting ahead of myself again. I will look at the journal- that is a great idea, thanks!

Forum Moderator

Date Joined Nov 2008
Total Posts : 5923
   Posted 8/21/2010 7:17 PM (GMT -6)   

Pain is pain. If you feel it, it is real ... even if they can't figure out what's causing it! I hope they do, though, and soon.

...fibromyalgia, hearing loss, elevated liver enzymes, skin grafting (back), arthritis, scoliosis, lumbar disc damage, sciatica, IBS, migraines, tachycardia, cancer surgeries (face).......I take Nortriptyline & Clonopin daily, and Darvocet as needed

Regular Member

Date Joined May 2010
Total Posts : 110
   Posted 8/21/2010 10:36 PM (GMT -6)   
I agree,, pain is pain :) he/she should do the pressure points probably first time there. It's easy enough to do. Good luck with your appointment..
DX: Fibro, PA (Psoriatic Arthritis), Psoriasis, Rosacea.
Formerly Savella, Now Lisinopril, Vit D, Prilosec, Ambien, LDN, Tart Cherry, DL-Phen
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