Name: Tami Sellers
E-mail : goldline@mchsi.com
Adult: 32 years old
City, State: Kunkletown, Pennsylvania
Area of body affected: Right foot
Personal History:
I was told I had melorheostosis back in 1999. My doctor had never seen it before so he tried everything just to help me with the pain. I tried magnetic shoe insert...anti inflamatories....arthritis medications.....and was finally put on Lorcet which is the only thing that helps the pain.
I had x-rays and MRIs. The bones in my foot have basically grown together and it is very painful. Some days the pain is so bad I am in tears and other days you would never know that I have it. Sometimes my left foot hurts because of they way I have to walk. I am told there is no treatment. This is something I have to live with.
I meet a new doctor this week. I am told she has treated people with this disease before and knows a lot about it.
I applied for disability because I can't be on my feet too long and also I am on strong pain medications. They don't understand this is something I have to live with my whole life. They awarded me a period of disability--about 7 months worth. The state obviously doesn't know much about this disease.
I wish it could be fixed. Isn't there a surgery that can fix this disease? I am tired of being on pain medication and I am tired of the pain.
I would love to talk to anyone in the same situation.
Update added 3/26/06:
Email: goldline@netscape.com
Location: Millsboro, DE
I have been suffering with foot pain for several years. I will guess 10 yrs or more. I have been on pain meds for too long now. I wish there was a surgery to fix this problem. It seems there is a surgery to fix everything else in this world, why not this? I would love to be pain free. I have gone too many years with this pain. It hurts to walk, it hurts to stand, it hurts to drive, and so on.
Disability has been denied me, I think because they know nothing about it. I told them it hurts to be on it so they said to get a sit down job. Well, that's easier said than done when you are taking pain medications 24/7.
If anyone reads this and has had or is having surgery for the same problem, please email me. I will even travel if I can have this problem fixed.
Thanks.