Discussion in 'Fibromyalgia Main Forum' started by emmally, Feb 22, 2009.
Has anyone been for viral like CFS (not fibro) and if so, did it help?
Thanks for responding. May I ask if they did any viral testing and if so what were there opionion on viruses causing cfs? Did you have any abnormal viral titiers prior to going and if so, did they address it?
I actually have a friend who is going for something other than cfs so it started me thinking about if it was of any help for people with viral cfs.
that is when I went, all they could recommend was a graduated exercise program after doing some xrays, the doc advised it wouldnt be good to get a dx of fibromyalgia necessarily cus he didnt think that was any better than somataform disorder pain or whatevr. fortunately my insurance paid. doesnt sound like they have changed much in 15 years.
[This Message was Edited on 02/22/2009]
I went to the Mayo in Rochester, MN in 2005 for CFS only. I had some POTS symptoms on a previous tilt table test I saw doctors in autonomic neurology and psychiatry since I had depression/anxiety previously. They did some autonomic testing and sent me to see a psych with the final results being that I should attend their 3 week 8hrs per day pain clinic to adjust my meds. I did not have any pain and was too exhausted to make it 8hrs per day in any type of treatment program which included a lot of exercise. My insurance would not have covered the pain rehab program so I didn't attend. I'm sure I would not have been able to handle it physically and it probably would have made me worse.
They diagnosed me with mild orthostatic intolerance and secondary depression and anxiety. They really focused on the psychological aspects in my case. They did give me some recommendations for orthostatic intolerance, but not for CFS or fatigue. It didn't seem like they took CFS seriously. I had no viral testing either.
i have heard that the mayo clinic is a waste of time for CFS, from many, many people.
to the Mayo Clinic in Scottsdale, AZ. Very nice facility, but all they did for me was conduct a sleep study and declare me "normal". I don't think they took my diagnosis of CFIDS, which was given to me by a naturopath, seriously.
I went to the Mayo Clinic in Jacksonville, FL. They were VERY thorough. I was tested for MS, and other nerve problems. I was seen by an infectious disease doctor, MS specialist, and a couple of others. My EBV count was way up and I remember having a high ANA. (I'm type 1 diabetic too.) My virus count was high too... Slightly. I can't remember what that's called right now.
I hadn't been formally diagnosed with CFS until I went to the Mayo Clinic. They diagnosed me and told me to find a good doctor in Atlanta to treat me. They did nothing but diagnose me.
I spent over $20,000, of which I paid 60% out of pocket. I just paid them off last year. I paid them every month. I stayed in touch with them to keep my account from going into collections... It didn't matter. They sold my debt to a collections agency anyway... They gave me no warning and when I tried to call them, they said it was no longer their issue.
If you have already been diagnosed, I wouldn't advise going.
is where i had the lame eval
but they did have the nice polite midwest thing goin on, which is worth jack
i can say that, i live in the midwest
My understanding is that they have no understanding whatsoever of ME/CFS. A waste of time and money. Marie
Lydia, I am from the Iowas City area, but have not been to the U for my fibro, but have wondered about the clinic. IS it worth it to go to see if they can do anything more than what my internist is doing? He has me on Gabapentin, Celexa, and Trazadone.
Separate names with a comma.