I?ve been researching information on Connective Tissue Disorders and thought I would see if maybe someone here has information on it. I recently had mitral valve repair for a Mitral Valve Prolapse (MVP). MVP is a common characteristic of Connective Tissue Disorders (CTD). I?m one of seven siblings diagnosed with MVP and suspect we have a CTD of some sort due to issues some of my other family members have had. I have a sister who is experiencing Parkinsons like symptoms, but who has not yet been diagnosed. I am aware of and have ruled out the most common CTD?s such as Marfans. Does anyone have any ideas on what one might be with Parkinsons like symptoms?
Connective Tissue Disorders
- Thread starter KatieD
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aussigal
Well-known member
May I suggest that you contact your nearest Genetics Clinic and seek thier assistance. I am sure they would be most interested to hear from you and your family. I contacted one early on in my search for answers and they were most helpful. In Australia these clinics are attatched to major hospitals and all services offered were free.
Parkinson-like symptoms could be related to nerve damage and Arthritic changes in the body due to CTD's. Ehlers Dahnlos Syndrome has many different types., maybe one of them may more closely resemble your sisters' symptoms. Again, a Genticist would be really useful here. Try the web first and see what you think.
Good on you for being an advocate for your family's health...keep up the search and Good Luck in finding some answers.
Parkinson-like symptoms could be related to nerve damage and Arthritic changes in the body due to CTD's. Ehlers Dahnlos Syndrome has many different types., maybe one of them may more closely resemble your sisters' symptoms. Again, a Genticist would be really useful here. Try the web first and see what you think.
Good on you for being an advocate for your family's health...keep up the search and Good Luck in finding some answers.
LUVMyBirman
Well-known member
In my early research....I did find a link between connective tissue diseases and Mital Valve disorders. Very interesting that you mention Parkinson's and or like syndromes. Direct relative of mine has Parkinson's. Also with moderate MVP. Would like to learn more about that link. I had MVP with severe reguirg corrected @ age 30 with a mechanical valve.
PJmomrunner
Well-known member
Gina:
It is suspected that some parkinson's drugs can cause valvular heart disease.
http://www.webmd.com/parkinsons-disease/news/20070103/parkinsons-drugs-heart-damage-link
It is suspected that some parkinson's drugs can cause valvular heart disease.
http://www.webmd.com/parkinsons-disease/news/20070103/parkinsons-drugs-heart-damage-link
Hi Katie,
I don't have any info about Parkinson's and can't answer your questions, but I have connective tissue disorder. My cardiologist also said I have some of the characteristics of Marfans, but not all. I had my mitral valve repaired in January and I'm going in tomorrow for a replacement. The CTD might have had something to do with the repair not holding, but I'll hopefully find out after the surgery. Anyhow, good luck with your research.
I don't have any info about Parkinson's and can't answer your questions, but I have connective tissue disorder. My cardiologist also said I have some of the characteristics of Marfans, but not all. I had my mitral valve repaired in January and I'm going in tomorrow for a replacement. The CTD might have had something to do with the repair not holding, but I'll hopefully find out after the surgery. Anyhow, good luck with your research.
Thanks so much for your responses, they've given me more to consider and research. Interesting that some Parkinsons' medicines cause heart problems. I'll tell my sister to watch out for those.
Unfortunately, genetics clinics are not free in the U.S., although I might be able to find a justification to have it covered by my insurance. Then again, maybe not....
Halley, thanks for taking time to think about my problems when you're facing your surgery tomorrow. I've been thinking of you as your surgery day approaches. My prayers are with you, I'm sure all will go well.
Unfortunately, genetics clinics are not free in the U.S., although I might be able to find a justification to have it covered by my insurance. Then again, maybe not....
Halley, thanks for taking time to think about my problems when you're facing your surgery tomorrow. I've been thinking of you as your surgery day approaches. My prayers are with you, I'm sure all will go well.
LUVMyBirman
Well-known member
Thanks P J. Parkinson's was DX after the valve disorder. I do worry that the drugs will enhance the valve reguirg further
aussigal
Well-known member
Myxomatous (not to be confused with myxomatosis) changes can be found in the heart including the Mitral valve. Basically a benign condition where some of the tissue goes soft, squishy and gelatine-like., not a great thing to happen but fixable. Search for "Myxomatous Degenerative Disease" or similar, it is another thing found to be related to Connective Tissue Disorders.
My tissue was tested for this when I had my AVR and it came back positive.
My tissue was tested for this when I had my AVR and it came back positive.
Adrienne
Well-known member
If I understand correctly, a myxomatous mitral valve is the same as Barlow's Disease. Am I correct?
