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Veteran Member

Date Joined Jun 2005
Total Posts : 527
   Posted 11/22/2010 9:25 PM (GMT -6)   
Been awhile since I posted.  Will try to sum things up-fairly succinctly-
After bout w flu--last Nov...(2009)--cane down w strange neuro symptoms...(muscle myoclonus..Fascicultions--etc)-  Went to neuro in my city...(at terrific teaching hospital)-& given battery of tests...(mri of brain..& cervical spine--thyroid blood test...emg)--all normal-
Dr. said it was "benign myoclonus"- &would resolve..on its own-!
It has NOT (..Late november--!  In symptoms changed & worsened)- muscle pulling....spasms--cramping back...moved to limbs...biceps...calves...chest...etc-
Applied to...the Mayo Rochester Minnesota....went in early June & again...early Sept
.--there are TERRIFIC!   Kind....caring Drs...nurses..& everyone!
They gave me THOROUGH battery of tests!  Tested me for Isaac;s syndrome...(rare neuro muscular disorder)---"motor neuron disease"...with EMG....blood....a complete blood count...AND a "paraneoplastic panel...(only 3 labs in USA....have this test--Mayo being one!)----Checked me..for antibodies...etc--all "normal"---
They feel(and NOW my neuro agrees)---it is benign...BUT....probably "auto immune" etiology!   And...caused by some....'antibodies'...(maybe after my bout w flu)---BUT---the symptoms continue!   ONLY med i take...Valium....(about 7.5 mg..before bedtime)---
Now...last 6 weeks or so---been feeling VERY fatigued...tired...ALL the time--!  Not refreshed after sleep.....!  At nite wiped out--Lousy stamina! research..(with people who DO have Isaac's syndrome..& other auto immune issues)--it seems....chronic a COMMON....side symptom!  Medical studies show.....that CFS.....GOES immune syndromes!
The Drs.....tell me...there is NO....ONE diagnostic test for CFS...( only one marker)---- question to-you .."HW"...compatriots---how many of you have...CFS....along auto immune issue?
This thing..(neuro symtoms & severe fatigue.).is nuts!
Please---ANY..and ALL feedback....would be greatly appreciated---thanks--wotan

New Member

Date Joined Oct 2009
Total Posts : 6
   Posted 11/22/2010 10:15 PM (GMT -6)   
Hi nice to meet you,

I have M.E./CFS and now i have tested possitive for autoimmune chronic idiopathic utercura, i am at present on a chemo drug cyclosporin to suppress the immune system down, and i have been looking around on the forums to find out that excat question, i do suffer severe with it, basically my body attacks me,like it would if you had a virus.

Regular Member

Date Joined Aug 2007
Total Posts : 255
   Posted 12/2/2010 9:56 PM (GMT -6)   
Hi there! This is my first time over here at CFS. I have the auto-immune disease Ulcerative Colitis. It seems to me that when my disease is active, I'm exhausted! I can sleep 10 hrs at night and take a nap during the day. I know nothing about CFS, but that sure sounds like fatigue to me. When I'm in remission, I still likea bout 9 hrs sleep at night, but function really well don't feel tired all day like I feel now.

Not sure if this is helpful, but thought it was interesting that you were asking about this and I just happened over this way. I hope that you feel better soon.
UC Relapse after about 2+ years in remission. Stress, I think.
Self prescribed Asacol 4 pills 3X's/day, Canasa in am and Rowasa in pm
(left over from previous rx's) Waiting for my GI appt 1/3/11!!!!
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