Muscular and Nerve Disorders Forum - Marfans diagnosis and treatment

I had bad wrist and elbow joint pain today, so much so that I caved and went to a totally new doctor close to work, thinking it's normal inflammation from the cold weather...

He did a couple of tests, asked some questions, looked me in the eye and said "Boy...there is no doubt in my mind. You have Marfans".

I don't think it has sunk in properly yet...and I don't know what to expect emotionally once it does. There has been talk of this by other doctors but none had given any conclusive answers as none knew enough about the disorder...so I have thaught that it was just some vague guessing...and that it wasn't really a possibility.

The doctor stated that the supporting factors are:

1. I am really tall.
2. I undeniably have arachnoidity. (Long thin fingers)
3. Proved positive for the "Thumb test"? The amount that I can pull my thumb back?
4. I am of very slender build.
5. My arm-span is greater than my body span? Can't remember how that one goes. Shocked

6. I have a raised palette. Shocked

7. Crowded teeth.
8. I have hyper mobile joints.
9. I am double jointed.
10. I have lax-ligaments.
11 My eyesight problems is definately due to it.
12. I have partial pectus on the left side.
13. I have a midrif-hernia Shocked

14. Chronic joint pain/inflmation/dislocation

I have to make an appointment with a cardiologist to check if there is any cardio-vascular problems. scared

Although I don't quite know how to feel right now, there is at least some answers that has come from this:

1. The problem I have with my knees (Bilateral Patella Alta) is thanks to "cooperation" between Osgood-Schlatters and Marfans. Because of my lax-ligaments thanks to the Marfans, my knee caps was pulled out of place by the Osgood-Schlatters "growth-spirt".
2. The constant joint problems and inflamation now makes sense. The doctor also told me to get used to wearing a wrist splint when the joints becomes inflamed (Trust me...extremely painfull).
3. My eating habits is due to my raised palette (apparently affecting my sense of taste) and the midrif-hernia, somehow causing swallowing problems...(Once again something I always toke as "Normal"), and affecting the amount/way that my stomach can take.

But also questions:

1. How does a connective-tissue disorder possibly affect one mentally? Am I grabbing at straws wandering wether being BP2 is related somehow? Depression & Anxiety due to teasing when I was a kid, obviously...
2. How could no doctor NOT have seen this earlier???!!!
3. How much risk do I have of further complications.
4. What are the chances of me passing on this painfull form of existance on to my kids one day...that is if I find a girl who makes the first move...
5. How do I cope/manage with this painfull, irretating, debillitating chronic inflamation and joint problems?
6. Will it be possible for me to get some sort of Medical-Aid option that caters for my situation.
7. And if not, how the heck am I gona survive with having to constantly buy anti-inflamatories, make frequent visits to the physio...not to mention that some medication starts harming you after a while...

* Sigh * Sorry that I rambled on like this...

Is there some of you out there, with experience/knowledge of this disorder that can help me cope/discard some of these concerns...I know I am stating a lot of facts and asking a lot of questions Embarassed

But talking about it is the only way I can avoid having a total melt-down/panic-attack at this point.

I feel like a total medical freak...like a hypochondriac on steroids (Even though all my ailments are very real)...As it is, I might as well live in a pharmacy...

Just thinking of it makes my head spin...yet I know I need to just take it one thing/one day at a time...

Confused

Seraph...An angel with broken wings...