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@johnbishop

Hi @manda304, Welcome to Connect. Thank you for sharing. You mentioned your main problem is muscles being weak from having to pick up the slack from joints. I thought you may be interested in the following articles.

What causes muscle weakness?
https://www.medicalnewstoday.com/articles/325876.php

There does seem to be a link between Bicuspid Aortic Valve and connective tissue disorders according to the Marfan Foundation
https://www.marfan.org/bicuspid-aortic-valve

Has your doctor given you any suggestions for treatments?

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Replies to "Hi @manda304, Welcome to Connect. Thank you for sharing. You mentioned your main problem is muscles..."

@johnbishop I had physical therapy after both pregnancies and it didn’t help much. So far mayo has said fibromyalgia but I live out of town so it’s a lot to go back and forth for the classes etc. I do take muscle relaxers which help temporarily I do need to just get in shape but always drained (work full time and two small children) I also did have low vitamin d and got levels up after about a year of high doses. I also was diagnosed with hypersomnia/possibly narcolepsy (didn’t stop taking medicine for test so they couldn’t diagnose) my circulation is pretty poor too I’m very pale with bright veins and feet and hands go numb or turn purple quickly but they checked for cad and I don’t have plaques around heart. I do have non specific white matter lesions on frontal lobes (small vessel disease) which could be migraines too?? I will have to look at the link you sent. Just does seem like it is all related and really wanted to be able to just stop the degenerative of everything if I could

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