I have been sick for over 10 years now. My symtoms are weird and always changing. I will go through a few of them starting with the earliest and ending with the most recent. Cluster migraines, bleeding ears, heart murmur, hives from cold air, water, tea even if its a 100 degrees outside, strep infection on my neck, broncitis, bowel spontaneous evacuation, weight gain, blood & pritein in urine, elevated RA, elevated sed rate, eye infections, a temporary cystocel, red face, high blood pressure, enlarged aorta, and many more. I have been diagnosed with autoimmune dis, muscular sceletal dis, scleraderma, sojourns, fibromyalgia who knows. Every time I have a new symptom Dr's just act like I'm crazy. Any thoughts would be appreciated.
Thank you, bewbert

You're not crazy - we know our own bodies! Doctors just get frustrated when they can't diagnose accurately or when a patient doesn't get well and won't go away. I think they feel the same way about me, and I have only been at it for a couple of years, off and on. I guess you have had lots & lots of tests. I certainly don't know what to recommend, but just wanted to encourage you and say phooey on those that get frustrated with us. We must love them anyway and live each day with God's help, moment by moment.

CBFBLDR,
Thank you for your encouragement yes I have had numerous test but this is my first time to see this sight. After my diagnosis of an enlarged aorta with no explaination my husband suggested I look on line and describe some of my symtoms and maybe some one else could relate. Anybody out there with an enlarged aorta ( it is twice the normal size )?
Thanks

You may find help on the Heart Disorders Board.

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
http://www.hopkinschildrens.org/pages/clinical/specialty_genped.cfm

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).]

Thank you for your response Iwent to the John Hopkins site and learned a few things, what I have is really an aneurysm that is at 4.2 and should be repaired if it reaches 5 cm ( this was in the radiologist report). I would not be surprised if it reduced in size in the next 6 mo. prior to remeasuring as so many of my unexplained problems do disappear. The CT tech was the one who told me the rest of my aorta measured only 2 cm I have not found this in writing and will speak with the cardiologist when I see him.