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Doctors arent listening - should they? Your help?

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Old 03-17-2003, 03:53 PM   #1
Danielle in Port Hope
Join Date: Mar 2003
Location: toronto, ontario, canada
Posts: 1
Danielle in Port Hope HB User
Question Doctors arent listening - should they? Your help?

I am 40 yrs, female, 155 lbs with diagnosed Ankylousing Spondilitis of 25 years. Mother of a 11 yr son, great husband!
Stress is not a issue...(Docs like to use that one)

In the last 2 years I have and am still experiencing a very disturbing burn in my head above my right ear, (it clouds my thoughts, short term memory is non exsistant). This pain is the unbelievable and ALWAYS there! I also am VERY tired, my nerves electricute me @ 25 times a day all over my body (as if I am hooked up to a car battery). I am loosing a fair amount of hair falls out. (embarrassing). I frequently have mouth ulcers, experience night heat flashes, legs and spine are on fire ....dont sleep well... My heart has 3 slight valve murmurs...high BP on meds...the other problem I am faced with every day now is a burning right gets very and itchy....this make me feel sick to my stomach, HELP!

I have a seen 4 neuro's -all idiots! However my GP & rheum doc are ana? was "slightly elevated" as was a "inflammation" component in my blood....I yet to have relief of the head pain - when I "flare" I feel as if I should be calling for the ambulance. 2 demorals dont help, I am on Celebrex (works well) and high blood med.

Does anyone have a suggestion for me? Should my Docs be more concerned? My life is crap....needless to say I am very depressed as it has been 2 years of no diagnosis...

I had a head MRI done 17 months - negative, is it time for another, or is that a waste? Is there another test for my head?

Giving up hope, Danielle

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Old 03-18-2003, 08:21 AM   #2
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Join Date: Apr 2002
Location: California
Posts: 264
RedeemedHeart HB User

Have you ever had your estrodiol levels checked? I had that same weird heat in the head thing and it turned out to be estrogen deficiency.
I take a low dose of estrodiol and use a progesterone cream and it has taken care of it for the most part.
I also was loosing hair, having night sweats; memory troubles (I also have FM so some of that is normal for me) but the estrogen sure helped with the concentration problems.
The back pain is probably your AS. AS can also cause night sweats so the only way to tell if you need hormones is to get it checked. Don't let them check just your FSH levels make them do an estrodiol check specifically.
Hope this helps.

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