Posted 3/3/2004 10:20 PM (GMT -6)
Thank you , Brynn. I am going to a large teaching hospital. Hopefully they will get to the bottom of this. Was it a regular doc or an alternative doc tht finally diagnosed you?
Posted 3/9/2004 3:37 AM (GMT -6)
Well, I ended up getting many diagnosises besides CFS--FMS, MPS, IBS, depression, IC, sleep disorder, and more. And they're ALL from MDs. But they're all basically meaningless diagnosises, as far as effective treatments, so that's why I kept pushing and pushing. I couldn't believe I could be so sick, and have an illness without an effective treatment. I couldn't believe illnesses existed that could make you so sick you could no longer work, and not have an effective treatment. Plus the diagnosis for all of them is so subjective, what with no diagnostic tests available. It's just so hard to take them seriously.

But yes, MDs. I kind of gave up on the alternative practitioners, after spending thousands of dollars on things that were supposed to completely cure me, because they're *holistic* but that never worked for longer than 3 days at the most, most of them lasted closer to 3 hours.

Well, anyway, good luck on this next appointment. Keep us posted.
brynn,  Moderator for Chronic Pain forums
            and Chronic Fatigue Syndrome forums

Posted 3/29/2004 5:44 PM (GMT -6)
Hi Twinmommy,

The blood test for Lupus is not an accurate one. I know a woman who has Lupus and she had 4 tests performed by 4 different doctors before an accurate diagnosis was made. Your decision to get a second opinion is wise. Your symptoms do sound a lot like Lupus, particularly the butterfly rash.

I'm just curious, were you feeling exhausted at the time of your FM diagnosis? How would you rate your fatigue since '94? The reason I am asking is because I feel you should look further into a medical cause if your fatigue over the last 5 months has been sudden and more severe.

Best wishes,

Sue
Posted 3/30/2004 11:25 AM (GMT -6)
Thanks, littlesue, good catch! It had slipped my attention that Twinmommy's fatigue sounds new. Hopefully she'll be back to post an update. I just wanted to add another insight, and that would be a suggestion to consult an Infectious Disease Specialist. TwinMom, they are excellent diagnosticians, plus if you don't have CFS, this type of specialist will know what else can cause your symptoms. I hope you're getting some helpful info--let us know!
brynn,  Moderator for Chronic Pain forums
            and Chronic Fatigue Syndrome forums

Posted 10/19/2004 12:19 AM (GMT -6)
Hi
I think the skin condition Brynn is talking about is dermatitis herpetiformis (means snake skin); if you can write your name on your skin just by drawing your fingernail along it then that's probably it. It is associated with Crohn's Disease, which is considered an auto-immune disease.
Your story has striking resemblances to stories in the research literature of ME, (there's a controversy over whether this is CFS or just one cause) particularly the spots. The rash/spots you describe has often been considered a sign of the "acute, infectious" stage of whatever disease might cause ME, and your history since that is very characteristic.  In ME you get lots of opportunistic infections - anything going around, you get it. (Twice.) 
I don't know how this compares to the American idea of CFS or Lupus, if it comes to that, but hopefully this will help shed light.
Oh, how I envy you all those tests - getting a blood test of any sort here is a major challenge. But then again, I don't envy you the bills...

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