Name :     Linda Picotte

E-mail :

Adult:     54 years old

Location:  Las Vegas, NV

Area(s) affected:  Right leg, knees and I believe hands

Personal History:

I’m a 54 year old female, wife—married 37 years to the same great man, mom to one wonderful son, and employed full time at my HR job for 36 years.  I was having hand and knee pain for the past year or so and had previously been told it was probably just arthritis and getting older, plus I go up and down stairs everyday multiple times at my job.  The pain in my knees was getting worse as well as throughout different joints in my body and especially my hands and knees so my general practice/primary care doctor sent me for x-rays in late April 2011.  The x-rays indicated that further evaluation was recommended for the right knee and more x-rays were ordered. The x-rays done in late May came back with an “abnormality” in the right distal femur, patella and right proximal tibia—indicating that findings were consistent with melorheostosis of the knee and an MRI was recommended and ordered for both knees.  In early September I went for the MRI of the right knee and findings were consistent with sclerosing dysplasia and melorheostosis.  Subsequent visits to two ortho doctors verified the melorheostosis diagnosis. Haven’t done the left knee yet.
I’ve had x-rays in both hands in January and October of this year; diagnosis is severe osteoarthritis.  I’ve looked at the x–rays that were taken and they look very similar to x-rays on-line of people with melorheostosis in the hands.  I’ve not yet had a chance to go back to my primary care doctor to see if they believe the hand condition could also be related to the melorheostosis—since no one here seems to be very familiar with it and I doubt that the person who read the hand x-rays has looked at my total file to note that I have the condition in my right knee.  I will be following up on this matter.
Comments: I had three different doctor appointments—3 days in a row the first part of October—the first two with the ortho doctors and the third one with my primary.  The frustrating part is that neither ortho doctor knew very much about melorheostosis and I was advised that it was rare and I could look it up on the internet.  My primary doctor knew nothing of the condition. One ortho doctor gave me a print out of some sports medicine exercises after I asked him about whether or not exercises would be beneficial or help delay the progress of the condition.  Both ortho doctors advised that OTC meds such as Advil and Aleve can be taken and to use those that seem to work the best for me, and perhaps I could also try glucosamine. Unfortunately, I didn’t have a chance to do a lot of research between these doctor visits and didn’t know what sort of questions to ask them. None of these doctors even mentioned the idea of themselves trying to contact other doctors who may be more familiar with melorheostosis and trying to get some additional information to help me.  I guess if I want to do that, I’m on my own and will need to contact the doctors listed here at the Melorheostosis Association website.  
Thank you for having this site—it gives me some hope and a place to start looking—since I am an information freak---the more I feel I know, the better I feel, and right now, I feel pretty lost on most days!   Time permitting—I will be visiting here more frequently—thank you so much!

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