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Devan’s Story (MCTD)

Devan's Mixed Connective Tissue Story My wrist pain started in 2011. I didn’t know what had hit me. I had always worked like a dog all of my life and didn’t let anything slow me down. I am 43 and have been a nurse since I was 19. Since my wrist pain started I can’t even open a jar of pickles.

I saw orthopedist and a rheumatologist with no conclusive answers. My nurse practitioner did labs and I had a positive ANA. That was two years ago. I have since had to change and start seeing someone else as my primary care physician and all my labs are normal.

My pain continues to get worse with time. My new doctor seems like an idiot (nurses make the worse patients) and he tells me it is chronic tendinitis. I had an MRI of my right wrist that shows a vascular necrosis of my scaphoid and lunate as well as erosion of the bones. I am gonna take him the report on my next visit and ask if he still thinks it’s tendinitis. LOL.

Devan
Tennessee
Submitted 02/20/2014

The informational content of this article is intended to convey a personal experience and, because every person’s experience is unique, should not be relied upon as a substitute for professional healthcare advice.

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3 comments

  1. I can SO feel your pain Devan. I am not a nurse and I continuely have to do my own research on Marfan Syndrome. I have no clue what will happen to me one day, if I end up in the ER and I cannot say, “NO, I can’t have anything that thins my blood”. Took me two years and I stopped counting how many doctors to get my diagonises. Keep fighting Devan! I am!

  2. I clicked on this because I have Ehlers-Danlos Syndrome, a connective tissue disorder, and have dealt with a series of misdiagnosis on various joints and body parts. You need another doctor. I had to consult 10 of the best orthopedic hip surgeons to find someone to help save my hip because I have a rotational deformity combined with other factors, a failed hip surgery, and EDS. I finally did find someone that knew exactly what was wrong, and they are at Hospital for Special Surgery. I live in California, so I have to fly to New York City for the surgery, but it’s better than another failed surgery in my opinion. I looked it up, and they have several orthopedic surgeons there specializing in the wrist: http://www.hss.edu/physicians.asp On the right hand side you can select “Speciality,” and “Sub-Specialty.” I would pick orthopedics for specialty and wrist for sub-specialty. I don’t know if you live in the United States though. You can ask them if they would do a film review if you don’t live in NYC, and many of them will if you explain your situation. They would refer you to another doctor like a rheumatologist if they felt it was related to an auto-immune disease or your connective tissue disorder. Have you joined support groups for your condition? I don’t know if there are any for wrist problems. There are quite a few for hips. They might be able to help you find a good doctor in your area. Hospital for Special Surgery has some very good doctors, but I know it is impractical for some to travel that far.

  3. It’s so nice to know I’m not crazy. I’m having issues with my left wrist and only three splints and 4 Urgent care and ER visits later did a PA say it’s in your tissues. Hopefully the orthopedic surgeon will see the same.

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