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They think I have marfan's syndrome but need to find out....

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Guest

The hospital and my doctor think that I may have Marfans syndrome but my doctor has asked me to try to find out if other people with this condition have similar problems with there joints to me, or if this is completely unrelated.

I am hypermobile but I go through spells where my joints are a lot worse than normal, it feels as though my joints (especially the larger joint shoulders, knees, ankles) are trying to fall out the sockets, they click a lot more than normal and feel really lose, saying this they also seem to catch and I can pin point pain when performing certin movements. When feeling like this my fingers also seem to lock a lot more.

To top it off I also have issues with my bowel!

Dose anyone else with Marfan's have the same sort of problems or is this unrelated?

0 likes, 3 replies

3 Replies

  • klitwestwood
    klitwestwood

    Posted

    ive had these strange symptoms all my life but ive only just been diagnosed with the condition due to my heart now being affected and causing terrible pain. im 49 yr old now.

    ive had the spontanious pneumothorax 10 yrs ago and since then my symptoms have got gradually worse.im now looking at surgery on my enlarged aeorta and 1 of my heart valvues is also affected.

    my joints have clicked all my life but untill i was diagnosed with this i just thought it was bcoz i was tall and ive had my legs broke at the knee caps 3 times.my left arm is now next to useless and i cant pick anything up{connective tissue disorder}which is very frustrating as im left handed.

    i must add that im under stepping hill hospital in cheshire who are absolutly amazing.i lived in tameside before and have been complaining of all these symptoms for years but got nowhere with the doctors in that area.

    my quality of life is not good at the moment but i am assured and im very confident and re assured by the cheshire doctors.im on 6 tablets twice a day which is stopping the pain and the advice and proffesionalism of these medical staff gives me great comfort and hope.

    so im on tablets for the rest of my life but at least they found it before it killed me.my dad wasnt so lucky.

    keep your chin up mate as its not all doom and gloom.if i died tomorrow i can still say ive led a very full and active life.

    many thanks to the staff at stepping hill and maccesfield hospitals.you guys are great.

  • alison223
    alison223

    Posted

    Hi I am new to the site and thought I would answer your post. I was diagnosed with marfan syndrome in 1995 and had my aortic root and valve replaced in 1997. My name is alison and I am now 44 years old and mum to five grown up lads I have also found out since that I have fybromyalgia which can be related to marfans and I also have osteoporosis in november of last year my aorta dissected and this has lead to me giving up my job and driving but hey I am still here x I have hospital in a couple of weeks to find out if I will need more surgery only one of my boys has the marfan gene and it affects his heart and his joints if I can be of any help at all please contact me x

  • Joanne_IsleOfWight
    Joanne_IsleOfWight

    Posted

    My two daughters and my Marfan's was diagnosed in 2008 after a genetics nurse's referral - we were seeing her about our hereditary hearing loss! I reccommend asking your GP for a referral to a geneticist or for referral to The Royal Brompton / Harefield Hospital for one of their diagnostic clinics - 'Google' Dr Ann Childs. Sadly we dont seem to have a Marfan's specialist on the Isle of Wight but out Cardiologist (Dr Dallas Price) is great.
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