[ Post a Response | Trisomy 22 and Misc. 22 Interest Board ]
Posted by tom chase on 12/26/2006, 3:03 pm, in reply to "Re: diagnosis" --Previous Message--
4.141.110.231
Yes thank you for replying I hurt my foot believe it or not, and then I had a lot of nerve pain problems. I was also born with deformed feet so my pain manegment specialist suggested that I should see a genitic dr just incase there might be a conection between my feet and my nerve pain. Well sure enough I scheduled an app and she was more interested in my past than the foot prob, she suggested that I take a phish test to see if I might have this 22q, she was perplexed because I had all the physical prob or at least 80% of them, I also had the major learning disabilities but only in certain situations, but as I said before I had none of the facial prob exept for the strubmismus, (lazy eye because of the surgury I had to my eyes) Well sure enough the test came back positive. She said that I was a very lucky man even though I had a lot of the physical prob I don't seem to have any sign of the major other syndroms or other major mental prob assoicited with the 22q, like skizofrenia for give me my spelling kind of sucks, so this is my story so far. I also at the same time was just diagnosed with charco-marie-tooth syndrom as well, so I think I traded with one instead of the other. In stead of the major mental prob associated with 22q that I did not recieve I recieved another rare syndrom how ever I'm taking this as sign, I have been very active growing up, working out, martial arts swimming, etc and alot of biking. I think that I am meant to help others out there who may not be diagnosed. I went through high school without a diagnoses and also went through hell because of it I don't want anyone else to go through what my family and I went through thanks for writting back if you have any questions I'd be happy to answer them for you if not my mother has been my medical advocate for years and I can go to her for questions that I can't answer. Hope this reply helped although it was a long one happy holidays to all. Tom C
: Hi Tom,
:
: My daughter has VCFS but was diagnosed
: when she was 6 months old. What led to
: a diagnosis at this stage in your
: life? What problems have you had with
: VCFS?
:
: Thank you Yasmin
:
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