Re: Cindy

[Guest guest]

I¹ve been to your doctor many times. They are not worth the energy that it

takes to get there.

Just check him off your list but understand that you will run into more

doctors just like him/her. My experience is that if the doctor doesn¹t

specialize in CFIDS they are worthless to us. I had an endocrinologist (nice

man) did a ³thorough² exam and wrote me a letter that my adrenals were fine

and to go off my cortisol medicine. When I asked the sec. to fax the labs I

found abnormal low levels of cortisol. And He never even checked my thyroid.

Unfortunately, we have all been to this doctor and will probably meet him

again. Don¹t be discouraged but see if you can find a young hematologist

(who maybe has some curiosity) and fax him information on CFS and your

concerns so that he will have some time to think and research out your

problem. If doctors don¹t understand your problem they belittle it or ignore

it or want to send you to a shrink.

If your temp. are still hgh and are able to do ³normal stuff² maybe you

should try another thermometer. I find if I take my temp while I am still

in bed under the covers that my temp. may go up a bit. My temp is always

below normal.

Good luck with the next doctor.

Lois

> Thankyou so very much for this.  I really appreciate it so much.  I went to

> the Hematologist today and it was a WASTED trip.  First off, I asked him what

> he thought about the rash on my face and neck.  He said that's not his job. 

> So there was no answer.  He had a bad bedside attitude and I'm NEVER going

> back to him.  He asked me twice if I drink--because he didn't listen the first

> time.

[Guest guest]

Here, here!!!! Hats off to you for GREAT GREAT ADVICE!!!! I am SOOOO

happy to not be, FINALLY, the only one saying that you NEED to see a

specialist, thats just how it goes cut and dry! Save your time and

save your quality of life! Like I said and you seconded, let a

specialist order tests and let him/her decide who you will go see if

you need to see a Hematologists of anything else. I am so happy to

finally read a post where I am not the only one saying you need a

specialist and thats that!!!!!

Who knows you may not need to do what right now you have been told

you need with a blood doc once you see a good specialist! What part

of the country to you live in, and I can say who is worth seeing

there - but like I have said, you have to understand there are only a

FEW who are world class and up to date specialists and they are NOT

goint to be a Rhuematologists of something your primary recomends.

There are just not alot of docs who have spent and dedicated thier

whole career to our diseases. Expect travel. Its just part of the

deal so shrug it off. You may be lucky like me and have a 5 hr or so

drive, but I would have flown to see Dr. Natelson. There are really

only 2 that through my research and lots of time asking people who

run sites and groups on our diseases who the best are, or who any of

them are since there is only a very very small amount. The specialist

you see makes all the difference is the whole world in your treatment.

Dr.

[Guest guest]

You can also do the shrink method to get them ruled out which is what I did.  I

saw four or five different shrinks and the opinions differed but it was these

differing opinions  and DVR trying to determine if I would ever be employable

that I used to push for the neuro psyche test.  That test can not be faked and

pinpoints the areas of the brain that are effected when one has MCS.

I¹ve been to your doctor many times. They are not worth the energy

that it

takes to get there.

Just check him off your list but understand that you will run into more

doctors just like him/her. My experience is that if the doctor doesn¹t

specialize in CFIDS they are worthless to us. I had an endocrinologist (nice

man) did a ³thorough² exam and wrote me a letter that my adrenals were fine

and to go off my cortisol medicine. When I asked the sec. to fax the labs I

found abnormal low levels of cortisol. And He never even checked my thyroid.