Finally--a probable diagnosis for my health problems

finally!! a probable diagnosis for what ails me.. I don't want to complain so i try to keep my troubles to myself {despite what some people may think}. I have been having some real problems with my eyes (dry, infected, painful) and a really dry mouth ( so dry that my lips stick to my teeth when i try to talk), dry skin, extreme fatigue, skin discoloration and some itching. The neurologist (I see for migraine and sleep apnea) has ordered numerous sleep studies because despite my c-pap being set correctly because i remain exhausted.
A while back I was talking to a friend at work and she said "gosh. that sounds just like Marie _ _ _ _. she has sjogrens disease and she has a lot of the same symptoms". now keep in mind that i have been telling my PCP for a long time that there is something wrong with me--- i just don't feel right. He has poo-poo'ed me for several years and i felt he thought i was a hypochondriac. Anyway Marie printed out a list of the symptoms of sjogrens---out of 52 symptoms i had about 32 of them.
So with paper in hand and the previous discussion with my opthamologist in hand--in my eye problem post earlier---I trotted off to my PCP again. I showed him the list and explained to him the whole thing and insisted that he test me for sjogrens, rheumatoid arthritis-- something-- and got them to take some blood for these tests.
anyway -- trying to get to the point here-- on Oct 26, 2007 my friend Sandy from the office called me at work to tell me the labs were back..... I could tell there was something wrong by the tone of her voice. Her exact words were 'well, here is the good news you don't have sjogrens." i said well that is good i guess-- i paused and said "wait, i can tell by your voice something else has shown up-- tell me" . The reply she gave me was something i could never have anticipated ..even though i have mentioned it in a previous blog. the words i will never forget and that have changed my life were what she said " your SCL-70 was positive'. being a nurse i sorta knew what was coming but still have a hard time saying it---she said "SCL-70 is the test for scleroderma".
OK-- so long story short is that i have a 98% chance that scleroderma is my diagnosis. What the heck is scleroderma?? It is a auto-immune connective tissue disease that is pretty rare (14 in 1 million people have this and of that number 3/4 are female usually aged 34-52--only about 300,000 people worldwide have this). Literally Scleroderma means "Hard skin"--according to which type of scleroderma you have the course of the disease is really wide.
according to some of the information i have found-- the prognosis for the worst kind and worse case scenario is surviving 2 yrs. Most people do not fall into that category- some of the other info is that the average life span after diagnosis is more like 20 yrs. But-- heck even at 20 yrs i will only be 68 years old!!! that is getting younger by the day. But, and this is a big but, we don't yet know if this IS my diagnosis (really hard to diagnosis) or what form i have, what effects this has already had on my body (usual time you have had disease until diagnosis is 3 yrs because it mimics so many other things). i have an appointment with the specialist at the end of January--so i guess we wait some more.
anyway-- if you think of it say a prayer for me, for my body,(not only is the skin effected but often the real problems are with lungs, heart, kidneys and guts getting sclerosed-- and not able to work correctly) and my family and my mental health as we all learn to deal with this devastating diagnosis.
here is a web site for the scleroderma foundation if you want to learn more- -http://www.scleroderma.org/

if you have made it all the way through this -- i want to say a special thanks to you

eyes again-- big old baby whine!

k-- Deep breath-- here is today’s news on the eyeballs. OK -- so Monday night my eyes were painful- but I put that down to the "trauma" of the procedures that were done. Tuesday-- my eyes were pretty painful and red and blinking was getting worse since that hurt. By last night, they were really getting worse. This morning when I got up they were so matted together I couldn't’ get them open at all-- even with my fingers- until I had put on hot compresses and really worked with them. Yep it was pretty nasty. By the time I got to work, I knew there was something really wrong-- I could barely open my eyes, my lids were swollen really badly and the sclera (white part) was this nice pink-to-red color and I looked like I had been on a weekend bender. I left my sunglasses on because they were so nasty looking. Anyway by lunchtime I was near tears (no pun intended) because of the pain-- and nothing I was doing was making them any better, plus because of the swelling my vision was getting bad. So I started calling around to see if I could find ANYONE Dr. wise that could see me today. I ended up right back with the Dr I had seen on Monday.

Anyway, by the time I got there my eyes were even worse if that is possible. She walked in and looked at me and said "Those are some seriously sad looking eyes." Sooo now that I have said all of that, this is what happened-- -well she doesn’t know for sure . She removed the punctal plugs she put in on Monday in case it was an allergic reaction (bet it wasn’t because the other one had been in for 4 years) but she took both of them out (yes Major ouchie). I had no sign of infection in my eyes on Monday --although she did tell me that I have the driest eyes she has ever seen in her 19 years of practice.-- today I have a rip-roaring raging infection in both of my eyes. No idea how or why this happened. I have to throw out all the medicine I bought Monday (just in case it is contaminated by the "virus" or I am allergic to it) :-( start another boatload of medicine eye drops. One of which is the newest, greatest, best, strongest antibiotic drop for eyes, a steroid drop, and another kind of moisture drop. If I am not WAAAY better by tomorrow, I am to go back -- I am off work at least until Friday (perfect time to scrap if I could see). And I am to see her on Friday morning if I am better. Her words not mine-- "Very very contagious viral or bacterial infection" so here I sit with washcloth over my eyes, putting in one drop or the other about every 15 minutes.

I know this is getting long -- and I hate to gripe-- but here is the even better part.... Since I have a lot of seemingly unrelated symptoms and not only with my eyes now they are probably going to do a auto immune system work up on me for possibly something causing this --- according to the Dr at work and the eye Dr it is pretty amazing to have a infection of this magnitude develop in less than two days-- that coupled with the previous back-of-the-eyeball infections I have had leads them to think it may be something systemic like Sicca Syndrome (Sicca syndrome: An autoimmune disease, also known as Sjogren syndrome, that classically combines dry eyes, dry mouth, and another disease of connective tissue such as rheumatoid arthritis (most common), lupus, scleroderma or polymyositis.There is a great preponderance of females. About 90% of Sjogren syndrome patients are female, usually in middle age or older.) had to copy that because I can’t spell Sjogren's LOL-- and that definition is me all over the place.

She doesn’t want to do anything about that though until the infection is under control.