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    Created in 2008, Phoenix Rising is the largest and oldest forum dedicated to furthering the understanding of, and finding treatments for, complex chronic illnesses such as chronic fatigue syndrome (ME/CFS), fibromyalgia, long COVID, postural orthostatic tachycardia syndrome (POTS), mast cell activation syndrome (MCAS), and allied diseases.

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how important is diagnosis? wait till i'm better?

bensmith

bensmith

Senior Member
Messages
1,547
no specialst in oklahoma sadly. hoping to wait until i find my baseline. I plan on waiting till i'm better but my family is obsessed with pursueing a diagnosis(I think they want mental healtht o start) anyway, i have a new gp, but i don't reall yfeel like trying very hard to get a diagnosis being sick. has it been important to you, been helpful? esp those who do not use a specialst? even possible without one? I had an appointment with levine in new york but both us and she are super scatter brained it seems! :p

my family also decided against levine. might try another specialst, wish there was one in oklahoma!
 
Judee

Judee

Psalm 46:1-3
Messages
4,497
Location
Great Lakes
A while back we had a member in Oklahoma City. At the time, I was not able to find any ME/CFS specialists in her area but I did wonder if she could go to Texas.

That list I gave you last week had some Texas doctors. This one has some pretty good reviews HERE. Some of the reviewers even mention LD (Lyme Disease) and Chronic Fatigue.

Would this be too far for you? It would at least be closer than NY. The reviews I've read so far make her sound very caring and also willing to look for answers.

Edit: I think I gave you two lists of doctors last week but this is the one I was talking about in this post. http://www.cfstreatmentguide.com/doctors-and-clinics.html

Even though the one in Dallas might be closer, he is an environmental doctor. They tend to focus on their pet diagnoses. I went to one for 11 years and finally realized that he did not understand ME/CFS even though he kept saying that he did. It still might be worth it to try him if you cannot find anyone else but I just wanted you to be aware of that.
 
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PatJ

PatJ

Forum Support Assistant
Messages
5,288
Location
Canada
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Tammy

Tammy

Senior Member
Messages
2,189
Location
New Mexico
bensmith said:
my family also decided against levine. might try another specialst, wish there was one in oklahoma!
Click to expand...
What about an immunologist? The only time my labs came out abnormal was when the immunologist I went to ordered specialty labs. I wish I still had those lab results. I was not familiar with half of what he ordered...........and some GP's weren't either.
 
G

geraldt52

Senior Member
Messages
602
As to the original question of "how important is a diagnosis", I'd say it really isn't important at all. No one even knows what CFS is, there is no accepted treatment for CFS, and a diagnosis of CFS does no automatically qualify anyone for disability benefits.

CFS is a diagnosis of exclusion, and it is the exclusions that are important, and what any doctor, professing to be a "CFS specialist" or not, should be concentrating on. It doesn't take a "CFS specialist" to do a thorough investigation of whatever is going on with you...just a doctor who is interested. If you're lucky you'll be diagnosed with something else, something that is treatable. Otherwise, you'll end up with the trash bin diagnosis of CFS and the best you can hope for is "treatment" for some of your symptoms, which, in my experience, will be as useless as no treatment at all. "CFS specialists" are almost universally very expensive, and you'd probably be better off saving that money for taking care of yourself, and not wasting it chasing rainbows...JMO.
 
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