Severe Disappointment

[Guest guest]

I went to the rheumatologist this morning and left in tears. What is it

with these doctors and not wanting to " officially " diagnose you with

something, but they tell you they think you have it and you have all of

the symptoms for it?? My pulmonologists thinks I have Cough Variant

Asthma and " you have all of the classic symptoms for it " , but doesn't

want to officially diagnose me with it (yet). The rheumatologist

doesn't think I have lupus (good but she admits some people have lupus

who do have the test result turn out negative like mine have, totally

ignored what I was saying about a new apparent photosensitivity), has no

idea why I have severe fatigue, and thinks I probably have fibromyalgia,

that I have the symptoms for it, but doesn't want to " officially "

diagnose me with it!!

She did give me a paper for a workshop for it, a support group info,

and a pamphlet for alternative treatment including acupuncture. I

thought this was interesting considering she said she doesn't believe in

CFS that she was open to alternate treatments. She also again mentioned

the study at Duke she was involved in with those 20 women with *severe*

fibro who did so beautifully with a gradual increase in exercise program

until they were running 45 minutes on a treadmill by the end of it. She

mentioned some exercise program she thought I ought to get involved in

to help me. She just totally is not listening to me when I'm saying, I

just can't do exercise, the slightest bit wipes me out. There is *no*

way I'm capable of driving somewhere everyday, let alone exercising once

I get there. If I could still drive somewhere everyday, and do

" exercising " , I'd still be working at my job. She said she can't refer

me for most insurance plans, my primary care doctor would have to do

it. I don't know whether she put that in as a suggestion for my pcp

when she sent her notes over or not. I think I have a better chance of

convincing my pcp that I'm not going to make it through that kind of

program.

She did offer to re-evaluate me down the line if I felt I had additional

problems, but she sort of shunted things back to the neurologist. I

have that appointment this Friday afternoon, but frankly, neither Dane

nor I feel that she is going to have anything either. I have been

working on my health problems since March!! I've seen 3 specialist, had

tons of blood tests run, other tests too, and so far, for all of my (and

the insurance company's) thousands of dollars, that I have gotten is a

tentative, but not official, diagnoses of cough variant asthma and

probably fibromyalgia. It's like they almost think I'm making up my

medical problems or at least the severity of what I'm going through.

There is *NO WAY* that I'm going to have the slightest chance of getting

disability without a firm diagnoses and doctors to back me up. So what

I'm left with is no job, no disability, no cure, no kind of medicine to

help me improve at all, and the lack of an ability to even tell people

what my problems are. The only thing I have going for me is a husband

that firmly believes me and *knows* I'm not making this stuff up. I'll

take him.

Darcy