lalalisa Posted November 8, 2005 Report Share Posted November 8, 2005 Hello,The progression from health to illnessMy mom: Healthy, got meningitis, lead to CFSMyself: Healthy, got mononucleosis, lead to POTS and CFSMy brother: Healthy, got mystery virus, now has CFSMy brother is 24 and a newlywed. I feel so sorry for him. It's just crazy - can't believe we've all reacted to a virus in this way. Is their any way to know more about how this happens? Genetic type testing?Thanks for your support - I know many of you have other family members who are dealing with illness also.Lisa Quote Link to comment Share on other sites More sharing options...
OCsunshine Posted November 8, 2005 Report Share Posted November 8, 2005 Lisa,I, too, want to know about some genetic research! I mean that really could be the key to figuring this out. My mom has always been a fainter, but didn't know what she had until -I- was diagnosed 11 years ago. My aunt has the same story, only more severe than my mom. I am more severe than both of them. My grandmother, too, has always had low BP. Seems to worsen with each generation in my family...I wish we could take these clumps of families and have some genetic research done. Looking forward to hearing some responses on this strand...-Rachel Quote Link to comment Share on other sites More sharing options...
joanie Posted November 9, 2005 Report Share Posted November 9, 2005 the gene for POTS has recently been discovered- I think by Mayo. Quote Link to comment Share on other sites More sharing options...
bbdeezy Posted November 9, 2005 Report Share Posted November 9, 2005 I just found out last month that my second cousin was just also Diagnosed with this. She was very surprised that her grandmother knew anything about it. When I was diagnosed I sent paperwork about POTS to all my family members. I am not glad at all that another family member has this but it is nice to know that my family will realize that this is a very traumatic desease and that I am not as quacky as they might of thought I was. Knowing someone else in the family had this POTS seemed to make it more real for me. I know that sound wacked out but.................... Quote Link to comment Share on other sites More sharing options...
OCsunshine Posted November 9, 2005 Report Share Posted November 9, 2005 There is a gene for POTS? Specifically for POTS? Or all types of OI? I dont get it... why haven't I heard about this? HUH??? Quote Link to comment Share on other sites More sharing options...
Mrs. Glass Posted November 9, 2005 Report Share Posted November 9, 2005 Sorry to hear you have so much of this in your family. I do not know what is going on with me. No one in my family has ever had any Neurological problems, Grandparents lived to late 80's and 100's. Parents died young, but not from anything associated with this. My Neuro asked me over and over if there is any family history, or if I have had any severe neck injuries, and the answer was no to both. Everything that I have read it is either due to genetics or severe neck injury, but I have had niether. Anyone have any ideas? VanessaHello,The progression from health to illnessMy mom:  Healthy, got meningitis, lead to CFSMyself:    Healthy, got mononucleosis, lead to POTS and CFSMy brother: Healthy, got mystery virus, now has CFSMy brother is 24 and a newlywed. I feel so sorry for him. It's just crazy - can't believe we've all reacted to a virus in this way. Is their any way to know more about how this happens? Genetic type testing?Thanks for your support - I know many of you have other family members who are dealing with illness also.Lisa<{POST_SNAPBACK}> Quote Link to comment Share on other sites More sharing options...
joanie Posted November 9, 2005 Report Share Posted November 9, 2005 I had heard they found a gene for POTs. I asked Dr. Fischer at Mayo (pediatric diagnostitian) a year ago, and he said, yes, they have found the gene. I had assumed it was Dr. Low and his research, but someone recently said they didn't think it was MAYO that found it. Now, finding a gene is like finding a needle in a haystack- so it's good they found it. But- any treatment , as I understand it, could be decades away. Exactly what the gene is for, or how it is transmitted (mom to child, mom or dad to child, ) I don't know. He said it was the POTS gene. Joanie Quote Link to comment Share on other sites More sharing options...
briarrose Posted November 10, 2005 Report Share Posted November 10, 2005 Vanderbilt is doing a studyhttp://www.mc.vanderbilt.edu/root/vumc.php?site=adc&doc=4787 Quote Link to comment Share on other sites More sharing options...
Evie Posted November 10, 2005 Report Share Posted November 10, 2005 If there is a gene that causes it doesnt that mean that there can be no refuting that it exists?I know that there isnt as much doubt as there is with cfs, however from hearing about alot of your experiences there still seems to be alot of doubt/ignorence in the medical community about POTS and OI type illnesses. Quote Link to comment Share on other sites More sharing options...
joanie Posted November 10, 2005 Report Share Posted November 10, 2005 Yes, I think it means we can say it does exist. When I tell people that Mayo found the gene, they look surprised and take it more seriously. Try it. Joan Quote Link to comment Share on other sites More sharing options...
morgan617 Posted November 10, 2005 Report Share Posted November 10, 2005 My sister was a massive fainter in childhood, but stopped as an adult. I seem to be the only one, except we both have mvp...morgan Quote Link to comment Share on other sites More sharing options...
lalalisa Posted November 11, 2005 Author Report Share Posted November 11, 2005 Thanks for your responses. It's just amazing how many of us have other family members with similar illnesses. Right now I'm the only one with POTS but we've all reacted similarly to different viruses.For us it seems more like a genetic susceptibility to a CFS - type illness.Lisa Quote Link to comment Share on other sites More sharing options...
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