July 17, 2003





Walt,



First, let me thank you for all the work you have done for the dups community. Second, you'll recognize me as the possibly over optimist poster of: PHASE III of BioSpecifics injections ("At least we had Paris"). Lets hope for all our sakes my naive optimism proves to be more or less correct.



Injury evidence;



I'm a 52 year old drummer who plays semi-pro twice a week. Have for years.  I agreed to trade off with our new percussionist every week and play the congas. Very unselfish of me, but this was the bad idea of all bad ideas. Congas are played with bare hands, and without training I hit them very very hard. Enough to cause my fingernails to cause bleeding of opposing fingers.

My hands would ake for some time after playing and would have to stop. 



Before this I was unaware of any lumps on my hands. Within six months I had palm lumps and 30 degree contracture of the left pinkie. Three months later I had a continuous lump across my palm from left to right (over 2" in length) and 50 degree PIP contracture. Seeing no other option I went under the knife. At the time of the surgery I had 00.0% dups on the right hand. Within one month of surgery I now have a palm lump and a cord forming into my long finger. The trauma from the congas, and the further trauma from surgery seem all too related to the spread of the disease. 



PDL Verapamil. The new 15% solution has got to do better than the earlier lower dose. However, I have not found one person on any forum to report success. "Brad" at PDL assures me that they know of many who have had success but will not give out names. I found an Italian study showing the addition of 2 g of oral l-carnitine strongly increased the effectiveness of injectable

Verapamil in Peronies patients. Different part of the body and delivery of medication, but as long as I'm spending $275 and trying to keep this stuff off my steering wheel and mouse (and everything else) I might as well get the l-carnitine. I have a one month base line to compare to the new addition of l-carnitine. I will let you know if I see improvement. You have one of the best sites, so anything I learn might as well go through you. 



If my right should eventually need surgery I will definitely see Paris for the first time instead. The recovery on my left has now been 11 weeks. It's hard to believe I'll ever be able to type normally again, but I trust my physical therapist. Lots of pain meds.

Avoid surgery at all costs!!!!!!!  



In this with you



Randy Harris