Self-diagnosed Lupus ;-) Wanna move to Ecuador

New Topic Post Reply Printable Version
[ << Previous Thread | Next Thread >> ]

New Member

Date Joined Apr 2013
Total Posts : 1
   Posted 4/8/2013 11:43 AM (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?

Forum Moderator

Date Joined May 2005
Total Posts : 7674
   Posted 4/8/2013 3:09 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 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
"Life is far too important to be taken seriously" - Oscar Wilde
New Topic Post Reply Printable Version
Forum Information
Currently it is Friday, March 23, 2018 9:08 AM (GMT -6)
There are a total of 2,943,095 posts in 322,919 threads.
View Active Threads

Who's Online
This forum has 161294 registered members. Please welcome our newest member, Dandrhuff.
361 Guest(s), 10 Registered Member(s) are currently online.  Details
notsosicklygirl, acarined, reno911, tickbite666, C_G_K, sierraDon, garyi, RunJerRun, Sahrob, straydog