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

New Topic Post Reply Printable Version
[ << Previous Thread | Next Thread >> ]

thor1211
New Member


Date Joined Apr 2011
Total Posts : 4
   Posted 4/11/2011 2:20 PM (GMT -6)   
***Cross posted on CFS Forum******

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?????

Gretchen1
Forum Moderator


Date Joined Jan 2007
Total Posts : 3565
   Posted 4/11/2011 5:36 PM (GMT -6)   
This has not happened to me but, I thought I would add my opinion. I would get a copy of all your MRIs on CD and the written reports that accompany them. I would go for a second opinion. Was the neurologist an MS specialist? If not, then that is who you may want to see.

Good luck. Hopefully someone can get to the bottom of this and you can find some relief soon.
Diagnosed with MS July 2006

I have no lesions on my soul and so I live with no limits.

thor1211
New Member


Date Joined Apr 2011
Total Posts : 4
   Posted 4/11/2011 5:53 PM (GMT -6)   
I have seen two neuros so far, none of the MS specialists. I have an HMO that has no MS Specialists, so I would have to pay out of pocket. I am currently looking into my insurance paying for most of it since I really havent gotten any solid answers so far.

Thanks for your advice!

Gretchen1
Forum Moderator


Date Joined Jan 2007
Total Posts : 3565
   Posted 4/12/2011 7:05 AM (GMT -6)   
Contact your local MS society and tell them what you have said here. They may be able to help you with cost and a referral.
Diagnosed with MS July 2006

I have no lesions on my soul and so I live with no limits.

tfofd
Regular Member


Date Joined Apr 2011
Total Posts : 56
   Posted 4/12/2011 7:32 AM (GMT -6)   
Yeah, you shouldn't get a diagnosis of MS and then have it ripped away. Will they still treat you with the medication that helps? Maybe the infectious specialist is finding a positive ANA when he diagnosed your CFS, and might think your immune system is overactive. That I would check into also. That I can relate with.
New Topic Post Reply Printable Version
Forum Information
Currently it is Thursday, June 21, 2018 1:07 AM (GMT -6)
There are a total of 2,973,988 posts in 326,198 threads.
View Active Threads


Who's Online
This forum has 161200 registered members. Please welcome our newest member, tremblayarlena.
264 Guest(s), 3 Registered Member(s) are currently online.  Details
Girlie, Stoutcee, tremblayarlena