kbkswgdc

Hi Jan,
Your symptoms sound very much like Fibro & CFIDS. Chronic Fatigue IMMUNE DEFICIENCY/DYSFUNCTION Syndrome. It is actually an illness that affects the Immune, Cardiovascular, Neurological, Peripheral/ Autonomic, Central Nervous & Endocrine systems. A problem a lot of people have (including many medical professionals) with it is that they don't think there is "proof" when there is scientific data to diagnose a patient. What you really need is a good MD or specialist who will listen to your needs and address each symptom. It takes time. I know of some excellent Dr's. It just depends on which area of the country you are in.

One thing that has helped in treatment here is to send a brief outline to the doctor before the visit. Usually I put down:

-name, birthdate, address
-medical history
-current condition
-problems
-goals
-list of questions

I send the list to him before the appointment so he can review it. Then I bring an additional copy to the office visit. Then the doctor has a better overview of what is going on & can quickly initialize treatment.

This depends on you and how you feel, but is there anyone you would want to bring to the appointment? Some people like this but others don't. I definitely never wanted to bring my parents, but brought along someone who I trusted & who knew the situation well.

Another thing that might help is to take some background research information you have from credible sources. A lot of doctors see 20-30 patients a day. They're very busy. If you have some good research, you'd be surprised how much more willing he might be to help you or try something new.

It is a simple in office test a doctor should consider. One of the largest problems for CFS and Fibro patients overlook is blood pressure irregularities. Mine has always been too low but no doctor EVER did anything about that. Most places just write it down & only if it's really high do they address it. When that was taken care of, the fatigue & pain lessened greatly.

If your doctor is not familiar w/ CFS or Fibro
[url="http://www.hopkinschildrens.org/pages/clinical/specialty_genped.cfm"]http://www.hopkinschildrens.org/pages/clinical/specialty_genped.cfm[/url]

is a physician consultation line. Dr. Peter Rowe is in charge of the Pediatric Center for Chronic Fatigue Syndrome at John's Hopkins University & is willing to speak to other doctors and give advice. He is an excellent MD and so respected. He sees kids every day from all over the country who have been homebound and in wheelchairs due to CFS. He's had extreme success.

Hope this helps, and hope you feel better. --kbkswgdc

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[This message has been edited by moderator2 (edited 02-07-2003).]