Guest guest Posted March 11, 2000 Report Share Posted March 11, 2000 HI BARBARA I WOULD LIKE TO KNOW MORE ABOUT Dr BASIL DARAS (E-MAIL ADREESS) THANKS A LOT HAVE A NICE TIME DIMITRIOS GREECE Barbara Ranagan wrote: > > > Hi, Barbara here. My husband who studied German (but is terrible at > languages) once told me that the word cranky comes from the word > crank in German which means " to be sick. " I do not have CMT, but > during the times I was recovering from a surgery or injuries, nagging > pain made me irritable and prone to losing my temper. (I am Irish > and have been accused of being a bit of a hot-head, but I gav'im such > a tongue lashing as 'e n'ver forget.) I know many of you are in > constant pain or suffer from constant fatigue. I wonder if this is > the root of ill-temper as opposed to a more organic relationship to > CMT. > > To Joanie and Ruth, my Alice has CMT2 and, more importantly, she > wants to learn how to quilt. Wouldn't it be lovely if someday we all > met (I voted in the poll Gretchen put together about finding a > vacation spot for us all, but I've not checked it recently). If we > all brought a piece of fabric, we could put together a quilt to > represent the support we have drawn from the snippets of each other's > lives via the world wide web. > > To Brad in Maine. I did a search on CMT on Medline (off the NIH.org > web site) and I remember seeing an article about a research of > french-canadian families with CMT. I don't know if this is relevant > to you. Given your location I thought you might be interested. > Also, I know it is a long haul down to Boston, but Drs. Basil Darras > and Frederic Shapiro (neurologist and orthopedist, respectively) > conduct the MDA clinic at Boston Children's and they are excellent. > I am from Washington, DC and went to see them last summer for a > second opinion for my daughter Alice, who is 8 and has CMT2. Her CMT > was not diagnosed until last year although, she exhibited some motor > difficulties as early as 4 years. Curiously enough, four years ago, > the first diagnosis was that she had suffered nerve damage to the > peroneal as the result of an immunization delivered in India. (We > adopted my daughter at age 1 year and do not have any health history > before then. Nor do we know her family history.) That diagnosis was > based, in part, on a terrible vaccination scar on her right thigh -- > obviously one of her immunizations went awry. (Isn't it odd that > several of us have written about adverse reactiosn with > immunizations?) I have thought of you a great deal since your first > posting, and I hope you find solace and support in our group. > > With my highest regard for you all, > Barbara > > ------------------------------------------------------------------------ > GET A NEXTCARD VISA, in 30 seconds! Get rates as low as 2.9% > Intro or 9.9% Fixed APR and no hidden fees. Apply NOW! > http://click.egroups.com/1/936/5/_/616793/_/952702288/ > ------------------------------------------------------------------------ > > Quote Link to comment Share on other sites More sharing options...
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