After 16 years of living with an undiagnosed neurological condition, because the last 4 years I have developed frequent one sided headaches I went to see a doctor that specialises in headaches..
The consultation I had with this doctor lasted a hour, he delved into my past history & because of my family history of Aortic Aneurysm’s, & the fact that my build is similar to the 3 family members that died, he has suggested to my Neurologist that I may have Marfan Syndrome.
This came as a surprise today when I saw my Neurologist for my annual appointment. He said it wasn’t his field & I needed to get my GP to refer me to a Rheumatologist, or this is what I think he said, but now I have Googled Marfan Syndrome I am thinking he said Cardiologist.
Anyone any idea what route I ought to take? As my GP will probably ask me what I want to do.
How are you? Marfan syndrome is a disorder of connective tissue, the tissue that strengthens the body's structures. This is due to defects in a gene called fibrillin-1 whic his important in production of elastic tissue in the body. You may be referred by your GP to a rheumatologist (because of the hypermobile joints), eye doctor (vision problems) and a cardiologist ( heart valve problems) in the evaluation. Diagnostics such as echocardiogram and Fibrillin-1 mutation testing may also be done. Try to avoid participating in competitive athletics and contact sports to avoid injuring the heart. Tale care and do keep us posted.
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