Name : Noralva (Nora) Gould
E-mail : email@example.com
Adult: 46 years old
Location: Minneapolis, Minnesota
Area(s) affected: Right hand
All my life the thumb on my right hand was different. I couldn't use the guitar picks that slid over the thumb because they didn't fit, but since it didn't seem to hurt I never thought about. My thumb nail was misshapen and my right thumb didn't seem to have the same range of motion as my left. But since I could still do a lot of things and it didn't hurt, I didn't really think it was a problem.
About six months ago my right palm started to get very red and swollen. I had thought that maybe I had grown a callus from using the computer too much (my job requires that I use a computer all day). Then I noticed that my thumb was also getting a weird shape and that both areas had a lumpy look to them and were red in color. I then noticed that my index, middle and ring fingers on my right hand would become numb if I drove, held the phone too long or when I was painting. I also noted that I would get a sharp pain that felt like a tooth ache during the day. I then went to my primary care physician to find out what could be happening. She referred me to a hand surgeon, who had x-rays and an MRI done. The hand surgeon also wanted to do a biopsy to see if the growing tissue was cancerous. So she did biopsy of my palm and my thumb pad--one of the worst and most painful procedures of my life. All three tests (x-ray, MRI and biopsy) came to the conclusion of a diagnosis of possible Melorheostosis. I then set up an appointment with the Mayo Clinic in Rochester. The physician there was able to give me a diagnosis of Melorheostosis and said that since the disease was very rare, that we couldn't come up with a care plan, but that I should follow up with him every 2 years. He also stated that I shouldn't have any surgery done without consulting him. This was a great relief to me since the original hand surgeon only had surgery as the possible option for my condition. The hand surgeon's care plan was to remove the tissue of my hand as it grew, which I did not look forward to. It was wonderful to have a doctor that actually knew the disease and we could discuss what could be done in the future.
Currently I am still having trouble with using my hand. It seems to hurt more at night when I try to sleep and I find myself not using it as much during the day- which is a problem. The tissue seems to be growing, and I am not sure why all of this would start at this stage of my life. I try to take over the counter medications to help with the pain, but the whole thing seems to be inducing an old injury to my neck to flare up (I think this is stress related). As of now I am observing the changes in my hand and when it becomes too difficult, I will follow up with the doctor at Mayo.
I am an artist and musician in my free time. I plan on continuing to paint and this diagnosis has spurred me to want to take portrait painting classes in order to enhance my skills. I also play guitar with my husband and now I have purchased a bass guitar so that I don't have the problem of holding a pick when I play. I went to the last Melorheostosis conference and the other patients gave me a lot of hope. One thing I learned was that some of the patients didn't let the disease slow them down. This is how I plan to work with this diagnosis- no matter what, I plan on painting and playing music as much as I can.
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