Anyone diagnosed with MS then have the diagnosis changed to CFS?

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New Member

Date Joined Apr 2011
Total Posts : 4
   Posted 4/11/2011 3:17 PM (GMT -6)   
Hello!! I am new to this forum and was hoping to hear some feedback. Here is my story.

I am a 38 year old woman, married with two sons. In September of 2006 I was diagnosed with MS (MRI showed white matter lesions on my brain stem) and immediately put on Betaseron. I could not tolerate the Betaseron, then was put on Copaxone. I was taken off the Copaxone when my spinal tap came out clean and my second MRI came back with the lesions not being very visible as the first MRI. I still suffered from horrible migraines, fatigue, weakness on the left side of the body, vertigo, shooting pain going down my spine and neck pain. I voiced my complaints to the neuro who told me that I need to take vitamins and exercise. I then went to another neuro who also ran brain and cervical mri's, as well as a VEP test, all of which came out fine or unchanged. He then referred me to an infectious disease specialist who told me I had CFS.

I should mention that I had a really bad flu in December of 2001 where I had a fever of 104 for 5 days. It left me exhausted as well as with severe joint pain for about a year afterwards. Infectious disease doc told me that this flu cause to autoimmune system to completely go "out of whack", hence my on going issues.

I am PERFECTLY ok with the CFS diagnosis, but what concerns me is that I was told at one point I did have MS, then after I took the meds, I showed improvement. I just really dont want to be misdiagnosed.

So anyone have been in my shoes?????

Regular Member

Date Joined Aug 2010
Total Posts : 96
   Posted 4/11/2011 5:54 PM (GMT -6)   
Have you ever been tested for Lyme Disease?

New Member

Date Joined Apr 2011
Total Posts : 4
   Posted 4/11/2011 6:15 PM (GMT -6)   
No, I havent, I dont live in an area or visited an are where it's prevalent. I am thinking that i should anyways. The doctors have asked me about it, but never ordered any tests.

Regular Member

Date Joined Feb 2007
Total Posts : 323
   Posted 4/12/2011 7:00 AM (GMT -6)   
Lyme disease is everywhere and should be ruled out. Expecially since you had the flu like experience.

I'm a bit annoyed with the way your doctors have been treating you. It is irritating to not get a proper diagnosis. If you showed improvement on the meds, why would they take you off? It sounds to me like you had CIS or clinically isolated something or other and copaxone is prescribed for that. I'm on copaxone right now for having CIS and I am showing some improvement with it.

I'm in the opposite situation as you. about 20 years ago was diagnosed with Chronic Fatigue, then possible MS. Then CFS again and also fibro. Then I found out I had lyme disease and treated that for 4 years. Now I have only neuro symptoms and have 3 lesions on my brain so the neuro thinks I have MS but don't quite meet all the qualifications for it. I think the lesions are probably from the lyme disease but hubby talked me into taking copaxone, which is helping me with some symptoms. Still have brain fog and fatigue.

I wish you luck in getting the proper info.
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