Self-diagnosed Lupus ;-) Wanna move to Ecuador

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samee&bamee
New Member


Date Joined Apr 2013
Total Posts : 1
   Posted 4/8/2013 12:43 PM (GMT -6)   
OK, I am been 'sick' - I swear since I was born ;-) I believe, that I started having symptoms of lupus when I was about 16. I won't bore you with all the details.

I have had a positive test for Discoid Lupus about 10 years ago - when my back had a TON of 'sores' that would heal, scar, then reappear. After that test, I was placed on Hydroxachloriquil(?) and the sores went away on my back. I still get sores in my mouth and nose and that pop up from time to time, and seem to last FOREVER ;-)

I still suffer from extreme fatique, pretty much have every symptom that is listed on the lupus site and that have been discussed on this forum numerous times. I am convinced - this is full blown lupus. However, I have had multiple negative ANA test. Sooo..... Dr diagnosis is:

Fibromyalgia, Hashimoto's, Discoid lupus... and 'unknown' autoimmune responses, blah blah blah

I really don't care what they want to call all this - my problem is that besides the thyroid meds and the HC for the Discoid Lupus... they refuse to provide any other additional meds. The pain is unbearable, my breathing is a mess, the fatigue is overwhelming. I've been to two Rhuematologist, have changed primary several times... but it is always the same... negative ANA. Honestly I've given up - haven't been to a dr in at least 9 months... prescriptions are close to empty - but I just don't want to fight the battle with THEM anymore ;-) There are no other Dr's available under my insurance plan in the area - and being on disability, paying for healthcare is impossible. BUT all that is beside the point ;-)

I've decided to move from FL to Ecuador - for a variety of reasons, mostly financial. Does anyone know what affect the increased UV will cause while I am NOT under ANY medications (even for the DL)? There is also a Lupus Research Clinic there - think I should waste my time?

Lynnwood
Veteran Member


Date Joined May 2005
Total Posts : 7723
   Posted 4/8/2013 4:09 PM (GMT -6)   
For me, the increased UV light would be an issue...I don't think living right on the Equator would be a good plan.

It contributes to inflammation in general -- which influences skin, fatigue, joints, muscles....whatever your body's weakness is, it will just exacerbate it.

Best advice -- look at www.lupus.org to find the local chapter near you. Then talk to them and find out what local drs on on their advisory board. These are generally the rheumy's most interested in Lupus, so these folks know that a diagnosis can be made on 4 of 11 symptoms. The myth that you must have a positive ANA -- well, it's a myth. Also some rheumy's are willing to do trials of plaquenil and prednisone to see if they have an effect on your symptoms -- a diagnosis by reaction to meds can be made.
Lynnwood, Lupus & Sjogren's Moderator
DIAGNOSING LUPUS & LUPUS RESOURCES
"Life is far too important to be taken seriously" - Oscar Wilde
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