CFS-No Dr. Seems To Wanna Go There..!

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Wotan
Regular Member


Date Joined Jun 2005
Total Posts : 489
   Posted 7/21/2012 6:43 PM (GMT -7)   
Friends here at HW--
 
It is going on about 3 yrs now-!   Always tired,,,....sometimes soo fatigued..like I'm paralyzed- sad
One thing I was wondering...if you guys could help me with,,....I have been to the Mayo Clinic..in Minnesota..4 times..in last 3 yrs---for a strange "neuro muscular" issue---which turned out to be benign...but IS rare...."Peripheral Nerve Hyperexcitabilty"--& is considered to be auto immune..in etiology...-!
 
 
I was given thorough blood tests...(checking for all sorts of antibodies & monoclonal proteins)--all negative--!     Anyway---ALONG with my "waxing & waning"...of the neuro muscular symptoms....there has always been...the...fatigue--!
 
Asked Drs,..both here...in Phillly AND at Mayo Clinic--in Minnesota...about CFS....& they all say the same thing..like they don;t wanna go there-!  (Stuff like.."Well...even IF you tested positive for EBV....it does not mean you have CFS)--- eyes
And.."CFS..is a diagnosis of...exclusion-!"--"We HAVE to exclude ALL other...causes...(viruses.  cardio vascular ..auto immune....etc...)--
 
My question is--OK...HOW is a person...OFFICIALLY diagnosed....WITH CFS---? confused
I am tired ALL the time--!  My sleep is "unrefreshing"..I tire easily---!   I get transient dizzy spells---AND..I have had EVERY blood test (CBC...chemistry...etc)--Cardiac...ultrasound--
 
I have seen a (besides my PCP)---a cardiologist   ( I get episodes of SVT)--Gastro-( for IBS & Diffuse esophgeal spasm)-E/N/T...neurologist...(INC an intensive neuro--exam...at the Mayo Clinic...)---No one can find....anything wrong--! 
 
I am suffering from some depression---take Valium...for anxiety..(7.5 mg..before bedtime)------a  lipid lowering drug--  Tenormin..(just 25 mg...for my SVT)---& Zegerid..for my GERD--
 
BUT....NO Dr...............has Dx...with CFS...AND...they do NOT even want..to even...consider it--!  It is almost like a "non real"...disorder--!  Am I ALONE in this perecption...?--- smhair
Someone....get back....TIRED & EXHAUSTED...in Philly---!  Robert...(Wotan--I was a big Norse Mytholgy major in collrge--hence the strange nickname--BUT--CALL me..Rob)-  thanks

Wotan
Regular Member


Date Joined Jun 2005
Total Posts : 489
   Posted 7/21/2012 7:10 PM (GMT -7)   
PS---Here is a good link from WebMD--on CFS--
 

madisun
Regular Member


Date Joined Mar 2012
Total Posts : 151
   Posted 7/28/2012 3:46 AM (GMT -7)   
That whole "exclude ALL other possible causes" works in your favour. If there is somthing that can be fixed, you want to find it. I would be furious if I found out that due to lack of propper testing the years I've spent with CFS didn't actually need to happen.


That said, there has to be a point where the testing stops. How far do you take the exclusion?
How long do you test for, how long do you get clear lab work for before you get told you have CFS?

A lot of doctors "don't want to go there," with CFS and fibro because it can be a black hole diagnosis. There's a lot of incredibally bad doctors out there who will see Fibro and CFS on your history and just write you off. (Which is why a good doctor should be stalked from practice to practice, and never EVER alowed to retire.)

And there's a chance you don't have it. Follow that chance, because if they can find somthing treatable you'll be endlessly better off.

Wotan
Regular Member


Date Joined Jun 2005
Total Posts : 489
   Posted 7/28/2012 8:35 PM (GMT -7)   
Madisun--great post-!   I luv your idea that Drs...see CFS as a "Black Hole"-!
 
I;ve been saying for years--I felt CFS...is an "auto immune" disorder-
 
Here is a very good link--on this--Thank God I;m not alone--  Regards--Rob
 
 
 

ativan45
Regular Member


Date Joined Jun 2011
Total Posts : 162
   Posted 8/16/2012 4:56 PM (GMT -7)   
hi wotan you dont have cfs I can guarantee that. I saw your post and I knew what was going on right away.

Wotan
Regular Member


Date Joined Jun 2005
Total Posts : 489
   Posted 8/31/2012 9:02 AM (GMT -7)   
Hi Ativan45--  Just curious..How can you .."guarantee"..I do NOT have CFS--? eyes
Drs...who have seen me..are not sure--!   How can you...who never met me...know for sure..?
 
Just seems more than...curious--!  Any other feedbaxk...is welcome--I just know..I am always FATIGUED...with a "crippling"...fatigue..blood tests..(CBC..Blood chemistry...etc)--normal...as is EKG--! smhair

achievinggrace
Forum Moderator


Date Joined Nov 2009
Total Posts : 3266
   Posted 9/2/2012 2:31 PM (GMT -7)   
Hi Wotan,

Your symptoms sound a lot like Lyme disease. Unlike many other diseases, it is not excluded by a negative test result. The tests look for antibodies to the bacteria but if you have had it a long time, the disease actually suppresses your immune system, so the antibodies are not produced.

Step on over to the Lyme forum and have a look at the "New to Lyme?" thread. There are symptom lists and other info that might help you in solving the mystery of your health problems.

Hope you get some answers soon.
Co-Moderator Lyme Disease Forum
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