Wednesday, November 28, 2007

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- -

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


Laurie said...

(((HUGS))) you'll be in my thoughts and prayers!!

Laurie said...
This comment has been removed by the author.
Ann Marie said...


You will be in my prayers!!!

There was something on the site that mentioned people could go off medication when their scleroderma was no longer "active"--I will first hope and pray that you don't have this, but then also that if you do, it can be a mild form that will go inactive!!!

~Nancy~ said...

Sending you biiiiig {{HUGS}} I'll be thinking of you!! XOXO

Sherri said...

Praying for you! Glad you added me to your blog list cause now I found yours.

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