Name : Noralva (Nora) Gould
E-mail : noralva.j.gould@aol.com
Adult: 46 years old
Location: Minneapolis, Minnesota
Area(s) affected: Right hand
Personal History:
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.
Comments:
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.