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Have Marfan's syndrome with grinding joints slipping out of socket. What to do?

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Practicing since : 2003
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I am looking for a doctor familiar with Marfan's syndrome. My daughter and her father have it. Most of their joints are grinding and slipping out of the socket. Very painful and having trouble in day to day activity. Doctors keep sending us to other doctors and no answers
Posted Sat, 14 Dec 2013 in Bones, Muscles and Joints
Answered by Dr. Dadapeer K 1 hour later
Brief Answer: Orthopedician and pulmonologist consultation. Detailed Answer: Hello Welcome to health care magic Marfans syndrome is a genetic disease affecting the connective tissue. The disease is because of defect in the gene 13 q fibrillin and it is transmitted as an autosomal dominant trait hence can be transmitted from parents to children. It involves multiple systems of the body. Being an Ophthalmologist I come across lot of eye problems associated with Marfans syndrome. The important organs involved are heart, lungs, spinal bone, joints, eyes... Lungs are involved in the form of lung collapse, pneumothorax and joints in the form of increased flexibility and hyper mobility as you have mentioned in symptoms. The treatment depends on the system involved and usually requires ophthalmologist for eye involvement, physician for heart involvement, pulmonologist for lungs, orthopedician for bones and so on. Since there is no treatment to arrest or reverse Marfans syndrome rhrumatologist does not have role in treatment. Hence you nerd to consult pulmonologist for lungs problem and orthopedician for joint problem. Hope I have answered your query. Thank you
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Follow-up: Have Marfan's syndrome with grinding joints slipping out of socket. What to do? 19 hours later
I am a seventeen year old female who was diagnosed with Marfans Syndrome four years ago. I've been in and out of physical therapy sense the age of five. At five years old my knees started to dislocate and my doctors just sent me to a physical therapist. My doctors were never able to put two and two together so I continue to research more about the disease to help benefit myself. I have scoliosis, my hips and shoulders are not aligned, all my joints dislocate, get stuck or roll out of there sockets constantly, I had over crowded teeth but when I got braces I had some removed. I don't have the height im only 5'6" but I have very long arms, legs and fingers and I'm very slender. I have flat feet and my ankles are also severely caved in. I don't have any cartilage left in my knees anymore and one of my doctors two years ago said I had osteoarthritis. I also have J hooks in my knees as well and my knee caps do not lay in there sockets. My sockets are too small for my knee caps. My knees are constantly inflamed and they're almost also filled with fluid. I have a horrible time walking and just cannot walk right due to the pain and the way my knees and ankles are. My hips also tend to be very stiff as well which also makes it hard to walk. I have been shoved around from doctor to doctor. Once the word marfans is mentioned I receive very little to no help at all. I'm just started physical therapy again and my doctor prescribed me diclofenac but it doesn't help. Should I be taking NSAIDS. One of my doctors also told me that I should get cartilage put back into my knees but if I do that then my knees will continue to dislocate even more constantly. I need help with pain relief because on a daily basis I'm in 8/10 as far as pain level. I cannot walk or stand for more than an hour and a half but sometimes I can make it longer. Its becoming rather unbearable to deal with on a day to day basis because I can't do anything. Any help or information is greatly appreciated. Please help. XXXXX
Answered by Dr. Dadapeer K 5 hours later
Brief Answer: Pain relief can be obtained from analgesics. Detailed Answer: Hello Welcome to Health care magic Thank you for the follow up query It seems from the history you have provided here that you have predominanace of skeleton system manifestations in the form of Dislocation of knees Scoliosis Long arms with slender fingers Flat feet Osteoarthritis All the symptoms you have mentioned here are because of hypermobility of joints as a result of defective collagen. The treatment of your conditions require Pain management: This is by using NSAIDS and you are using DIclofenac which also an NSAID. If the pain is not responding you can use Ibuprofen. Physiotherarpy: This is to improve posture, muscle tone and general fitnss. Podiatry: This is to correct the flat arches of the feet by using insole arches. This is important because flat feet are responsible for ankle and knee pain. This can be done in consultation with a podiatrist. Treatment of dislocation and osteoarthritis: This is to be done in consultation with orthopedician along with Rheumatologist. Occupational therapy: This seems to be important as he will be able to guide you regarding occupations you can carry out and to regain self confidence. Hence a multisystem approach is required with priority for pain management. Hence I advice you to discuss all these matters with your doctor and he will be able to guide you further. Hope I have answered your query. Thank you
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