Was anyone here diagnosed with CFIDS before SJS?

[downrabbithole]

 

I was given the diagnosis of CFIDS by 2 doctors and then told that that was an illegitimate diagnosis by several other doctors. I even had one doctor diagnosis me with some bladder issue without ever looking at the test results from my urinoscopy or doing one herself....how bizarre.

My current doctor believes in CFIDS, but says I do not have it and the other doctors were kind of just putting me in a diagnosis waste basket, as can happen with CFIDS.

But I have really been pondering as to what makes Sjogren's, lupus, etc. "real" to doctors and CFIDS "not real"?

I'm only all too happy to know I don't have CFIDS after the looks people and doctors give you when you say you have it, but sometimes I wonder if its billed as illegitimate because there is no medicine for it.

Thoughts?

What has been your experience if you were dx with CFIDS first and now know you have Sjogren's?

[Skylar]

Hi Downrabbithole - it's frustrating isn't it. I have CFS aka CFIDS aka ME. There are no diagnostic tests to diagnose this disease, rather it's a matter of ruling out other potential causes and at the end it becomes CFS. The CDC has information about diagnosis that is clearly spelled out. Do you fit their definition?
http://www.cdc.gov/cfs/   It's so frustrating to find a Dr. who accepts this as a real diagnosis.

Skylar

[Rania]

Another person with Sjogrens and Lupus, and ME as we call it here. We don't use the term CFS or CFSIDS where I come from. I got the Sjogrens diagnosos first, but the doc forgot to tell me for 2,5 years that my lip biopsy was psoitive. 
So I got the ME diagnosis one week before I got the sjogrens diagnosis, but I should have had the Sjs diagnosis 2,5 years earlier.

I'm very sure that most of my problems comes from ME. The fatigue in special. Sjs also has that aspect, but I spent a week in a reymy hospital, and I was very different form all the other sjogies. I've been diagnosed Lupus a while back. AI seems to occur one after another.

Rania 

[Katybarstool]

Hi

In the UK we have a very new guideline for treating ME. Here it is http://www.nice.org.uk/guidance/index.jsp?action=folder&r=true&o=34186.
Hope you find it useful.

Kathy

[Rania]

Thank you very much for your information and link, Katy! I'm sorry I haven't responded to this thread earlier. I have read a little "here and there" (I think the whole document was like 269 pages or so....) in the link, and I have found a lot of interresting things to read. Thank you!!

Rania