CSF

[Jpac]

Is testing your csf something that docs will consider with cfs symptoms? Of ALL the reading I have done I guess I just haven’t see a lot on this? Curious if this test/analysis has given any direction to what’s happening and more targeted treatments. Thx

Joe

 

[Wishful]

Unfortunately there is no test for ME/CFS yet, though there are some methods being worked on. As far as I understand it, doctors can diagnose ME/CFS, but really it's just their 'professional opinion'. So there aren't any test results available for directing treatments. Even worse, ME victims vary greatly in their responses to treatments. What helps one person might make another person--with similar symptoms--worse, or maybe have no effect. Finding treatments for ME/CFS so far is: 'try lots of things (not necessarily what others claim works for them) and see what works for you'.

I'm sure some people have gotten a professional diagnosis and some suggested treatments that help, but my guess is that statistically, the treatments aren't more numerous or better than those found by people who did it without visiting a doctor. Well, if you want to try something that requires a prescription, you do need a visit to a doctor unless you use of of those possibly scary 'no prescription required' sites.

In summary, don't expect a doctor to be able to provide a treatment that works for you. They just don't have the tools and knowledge at this point.

 

[Jpac]

Thanks for your response. My post was have been a little confusing with csf and cfs. My question was around a cerebral spinal fluid(csf) test. The post may make more sense if I would have spelled it out. Sorry

 

[Inara]

I fear it's not standard, although after reading a bit about it maybe it should be (at least if the symptoms fit).

 

[Wishful]

I didn't notice the spelling. I thought a cytokine and kynurenine profile of my CSF would show something interesting, but I still don't think a doctor would be comfortable prescribing drugs based on the results. There just isn't any understanding of what ME is, and thus no way to interpret the results properly. Given the reluctance of doctors to take CSF samples, I didn't bother asking my doctor about it.