Name : Michelle Kolarik (formerly Doucette)

E-mail :  

Adult:  24 years old

City, State:  Lafayette, LA

Areas affected:  Left forearm and upper arm

Personal History:

About 5 years ago I noticed on my left forearm what appeared to be a growth.  I wasn't sure what it was and it never caused me any pain or discomfort so I just ignored it.  About a year a ago during a regular doctor's visit, I questioned my doctor about it and he said "if it doesn't bother you, don't worry about it."  It didn't really bother me but I was very curious to find out what it was.  About a month or two ago I went to see a new doctor about headaches I have been having.  Toward the end of the visit I showed her my arm and her reaction was "Wow that sure is strange, we need to get that x-rayed."  I had the x-ray the next day.

When the nurse called back with the results she said that the radiologist could not give a specific diagnosis but that is was very abnormal and I should see an Orthopedic Surgeon. That doctor took another x-ray of my entire arm, from shoulder to hand. She showed me that on my forearm I had bone growth on the inside of my long bone and also on the outside and that is what caused the deformation on my arm.  I also had the same thing happening on my upper arm near the shoulder.  She wasn't sure what it was and said I may have to have a bone scan to see if this was happening in other bones and that she would send my x-rays off to a bone tumor specialist in Boston.  Well, now I was really scared.  Last week I went in to get the results. She said I had Melorheostosis. There was really no need to do the bone scan. She said it would probably show up in other places but there was nothing to do about it.  I have no pain in my arm.

It just looks a little abnormal. The doctor said to not worry about it and she would see me in a year to x-ray my bone again to see if anything has changed. She really did not give me much information on the Melorheostosis, just a definition and this website.  She said nothing about treatments.  I am really not sure what to think. After reading the other personal histories I realize that I am lucky that I have no pain associated with it. I just don't know if I should worry about it happening somewhere else in my body or if there is a way to treat it. I have included my e-mail address if anyone would like to contact me.  I would appreciate any help or advice.  I'm not sure if I should see another doctor or if I am just being paranoid.


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