CFS...AND "AUTO-IMMUNE" ISSUES-

Wotan

Veteran Member

Joined : Jun 2005

Posts : 529

Posted 11/22/2010 7:25 PM (GMT -7)

Hello-

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 fact....my symptoms changed & worsened)- muscle pulling....spasms--cramping etc..in back...moved to limbs...biceps...calves...chest...etc-

Applied to...the Mayo Clinic..in 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"...in 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)---

OK---HERE IS THE MAIN QUESTION--!!

Now...last 6 weeks or so---been feeling VERY fatigued...tired...ALL the time--! Not refreshed after sleep.....! At nite wiped out--Lousy stamina!

And..in research..(with people who DO have Isaac's syndrome..& other auto immune issues)--it seems....chronic fatigue....is a COMMON....side symptom! Medical studies show.....that CFS.....GOES WITH....auto immune syndromes!

The Drs.....tell me...there is NO....ONE diagnostic test for CFS...(Epstein-Barr..is only one marker)----

Sooo...my question to-you .."HW"...compatriots---how many of you have...CFS....along WITH....an auto immune issue?

This thing..(neuro symtoms & severe fatigue.).is driving...me nuts!

Please---ANY..and ALL feedback....would be greatly appreciated---thanks--wotan

jo8

New Member

Joined : Oct 2009

Posts : 6

Posted 11/22/2010 8:15 PM (GMT -7)

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.

TraciZ

Regular Member

Joined : Aug 2007

Posts : 255

Posted 12/2/2010 7:56 PM (GMT -7)

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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