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#1 ozzy69


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Posted 20 August 2008 - 03:35 AM

Hi everyone,

I have not been dxed with sclero yet, but we are in the process of finding out what is wrong with me. My rheumatologist does think I have sclero or MCTD. I have all my test on Sept. 3rd and go back to see my rheumatologist on the 17th. Hopefully I will find out a diagnosis. I really like my new rheumatologist. She is great!

When I was at my visit with her she was asking questions about my family and my boys. I have three boys ages 19,17, and 15. She asked if any of them have had any problems? I told her the only one that has had any problems is my youngest son. I started to tell her that he had:
Pectus Excavatum- had surgrey almost two years ago to fix, because it pushing his heart to one side.
Mitral Valve Prolapse - goes to heart doctor every year to have checked
Braces- crowed teeth
Near sighted- not bad
Then she said, " Is he tall, skinny and have long arms and fingers.
I told her that he is only 5' 8" but does have long arms and fingers and only weighs 115.
She ask me if I ever looked in Marfen, which is also a CTD. I told her I have read about but dismissed it because none of his doctors have ever brought it up. After the appointment I did more research and talked to his doctor about it and they have scheduled appointments with different doctors in Sept.
Has anyone else had problems with thier children? It breaks my heart to think he might have this. I can deal with my diagnosis, but his will really hurt. I have not mentioned any thing to him about it. I don't want him to worry. He does play soccer and will be devasted if he has to stop. He has some joint pain. We always thought it was just growing pains. Now I wonder.

Nina Lynn

#2 razz


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Posted 20 August 2008 - 06:47 AM

Nina Lynn,

This is the first time hearing about Marfen. I might do some research after I log out. It does make me wonder if my daughters (22 and 20) have inherited any type of health condition I don't know about. :unsure: For now, they are both doing fine healthwise. No major concerns. My youngest has complained about knee joint pain, on and off over the years. The eldest has the sickle cell anemia gene. So far they are okay.

I hope the testing done in September proves negative for CTD or any other condition.


Live well, Laugh often, Love much

#3 JJ-Knitter


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Posted 20 August 2008 - 12:01 PM

Hi Nina Lynn,

The research seems to indicate that if a close family relative has an autoimmune disease, the chances of other members of the family developing an autoimmune disease are increased... It may not be the same disease, probably won't be, but the risk is increased somewhat. The disagreement is over how much.

I have sclero and fibromyalgia. My oldest son has sarcoidosis, but he was in the WTC on 9/11 so who knows. The younger one (only 16 months younger) is fine so far. They are (gulp) 41 and soon to be 40.

Here is a Marfan information on the main Sclero site.

I hope everything goes well with both you and your son. Let us know, OK?


#4 ozzy69


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Posted 21 August 2008 - 02:57 AM

JJ & Razz,

Thanks so much for yor responses! I am hoping that they don't find anything with him. I will keep you updated.

Thanks again,
Nina Lynn'