No, I haven't. From what I understand about CF is that most with it do not live as long as me (34 year old.) At my age, I think it's considered a "long shot."
Good to hear the positive results! A ton of bricks lifted off your shoulders, I am sure!
I gathered a human diagram (outline) online, to print. I'm going to spend some time creating a graph (timeline) and try to organize/simplify it.
Think to draw my rough draft tonight and try to create a timeline in a software program.
I'll keep everyone posted.
~Kate
>Usually you sit on a booth type thing, and for some of the tests they may close the door.<
I am nearly certain we don't have this.
>Is it hard to travel to a more populated island for a better hospital, to see a specialist?<
We do have Alaska Airlines that flys here daily, provided weather isn't nasty (short runway, mountains surrounding and bad weather 8-0) and the Alaska Marine Highway (ferry).
What should be quick trips, take a long time (ferry, slow)and layovers with the plane. But easy to get "outside" aside from that.
>As for scleroderma, not all sufferers have serious skin involvement. In my case, my MCTD disease has some characteristics of scleroderma, but my hands aren't curled up and shiny either.<
Thank you for the clarification.
Interestingly, my mother always had shiny hands and now a thick nodule on one of her fingers.
She has high BP, cholesterol and recently diagnosed with osteoarthritas (bad back for MANY years).
Years ago, she had to temporarily take medication for her thyroid.
In my recent "travels" via online regarding symptoms and illness...I often think about my family. Their diagnosis, most different from one another. I can't help but wonder if the dx is partially right-missing the bigger picture, or missing the boat altogether.
>There are actually a LOT of autoimmune diseases that have similar characteristics to one another.<
Herein has been confusing to me because I've been all over the board, so-to-speak. I think, that sounds like me but so do so many other things. I've come to the conclusion that I can't figure it out on my own.
Thank you for sharing, I'm going to look into this further.
What blood tests have you had, that helped diagnose MCTD?
~Kate
have you been tested for cysic fibrosis ?
My issue with the growth is tonsil lymphatic tissue. No big deal - thank God! Now you need answers!!!
Let us know!
Deb
A full set of PFT's include a range of tests inhaling, and exhaling. Usually you sit on a booth type thing, and for some of the tests they may close the door. Is it hard to travel to a more populated island for a better hospital, to see a specialist?
As for scleroderma, not all sufferers have serious skin involvement. In my case, my MCTD disease has some characteristics of scleroderma, but my hands aren't curled up and shiny either. I don't fit Lupus perfectly either. That's why I got such a ballpark diagnosis. There are actually a LOT of autoimmune diseases that have similar characteristics to one another.