Undiagnosed and rare conditions
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Does anyone know anything about Von-Hippel-Lindau Disease ?

jose2jose2 Member Posts: 128 Pioneering
I have  been ? this disease for a few years now,as my eldest sister died and she was exhibiting all same symptoms for about 21 years before her death,I thought maybe she had MS as this condition runs in our family ,though it did seem different in a few aspects as MS as far as I know does not start at 60yrs old,I have a lot of the same symptoms as my sister and have been thinking about asking Dr if I could have another genetic test (the last unusual disease found c/o myself  is that I am an Alpha 1 carrier )Suggestions would be much appreciated


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