Lupus and Fibromylagia, That's ME!!!!!!!!!
Hi Everyone, I am writting because I have a very unique and complex disease going on here!! I am in hopes that someone will beable to help me by knowing some type of research program that they can possibly put me in touch with me!!!! Doctors say that I am too complex and can not decide what to do with me or what is really going on with me!! And guess what I have heard this for the past 24 years different Doctors but the same story after a few visits!!!! I am to the point I am frustarated and running out of money for all the tests and different Doctors!! So anyway I am rambling and I do that alot as I get older!!! TEE HEE Twenty four years ago I was diagnoised with SLE, all my test were positive and somelike the LE Cell was border line positive, ANA positive, you know them all so well I am sure! So began the massive doses of steriods off and on thru the years! At one point I began to loose my vision permeanently and had to be stopped and fitted for glasses. In the early years my biggest problem was hives and angioal edema which was causing my throat to swell closed to the point I had to be intabated! And that lovely butterfly rash! A few years later things started all over again! This time the steriods threw me into Adrenal Glands insuffiencies. Then in 1998 I went into remission which seem to happen overnight???? And I stayed this way until 2002. Of course during that time I was diagnoised with Fibromylagia. Which I couldn't take the anti depressions meds or the Flexerile!!! But I was strong and I kept going. In the fall of 2002 I came out of remission. Only to have new added symptoms of course the hives and the angio edema were back with a vengence. My muscle and joints hurt me so badly that some days I could hardly move!! My hair was falling out, my mouth was sore and full of irrating little mouth ulcers! I work with Doc's and one was an allergist and he thought it was allergy related. So he tested me for lots of things and I wasn't allergic to essentially anything! Then he decided that I was possibly alergic to myself and he gave it some big fancy name. So he drew my blood spun it down, and then injected my own serum back into my body again! Bingo I highly reacted to my own blood! This Doc did not believe that there is a disease called Fibromyalgia and stated it was a cop out diesease! But the really big thing is that this year when I had the Lupus testing everything came back NEGATIVE! Here I am no longer with postive test results to explain why I am having all of the symptoms but no positive results!! So here we go again seeing different Doc's all giving me the same report, you are to complex it will take a Doc smarter than me to figure this out! And say no need to come back as I can't do anything for you! Now I am having to carry an epi pen around with me for the angio edema in my throat and back on massive doses of steriods oral and IV. And the only thing that was happening was I was gaining 5 pounds a week! And since I am on the FLUFFY side already I certainly did not need the extra increase in weight! So I just told myself I am thru and stopped taking the meds! When spring came and the symptoms were still with me I decided to start tanning or as I say Fake Baking! I thought what the heck I might as well go for skin cancer! I had every blood test and MRI and CT scan known to man trying to find what was going on! Well you are not going to believe this and I don't want to give any one false hope, however after the first week of tanning my symptoms started going away! and as long as I tanned about every 48 hours the symptoms stayed away. But if I went over this time span they would start coming back! So I have been tanning every since. That is six months now! My Fibromylagia is still in a turmoil and the OMT specialist I see for that is now considering trying me on Methotrxate. Which is not a good drug for me as I am IgA dificient and have been since birth! And this meds would totally distroy what immunity I have left! My hubby and mother are very supporative! So this lenghty entry is why I am seraching for some one out there who might want to give me a research group I could join with!!! And hopefully it won't cost me! Hope that I didn't put anyone to sleep but at the end of 24 years with no real answers I am feeling very desperate!!!! I am anxious to hear your all's feed back!!! Barbara