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Curious About Family History Of Pots And Other Relevant Disorders


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So I am learning a lot between this forum and talking to family. Apparently, my maternal great-grandmother died in her 40s from Addisons, my maternal grandmother had Potsy symptoms, syncope, hypotension (though undiagnosed as Pots) my mother has mitral valve prolapse, hypotension, high pulse (treated with a BB) she also has Fibromyalgia. I have a sister that passed away when she was two from multiple system organ failure after being unable to control homeostasis. From start of her illness to her death was 2 weeks.(this was 1980)They have never determined a cause of death. However my brother and my self displayed alot of the same symptoms as she did and I was determined lactose intolerant (severe) and autonaumic dysfunct., my brother was diagnosed, lactose intolerant and hypoglycemic. And of course I have Pots now soooooo....

My question is; have u noticed any strong significance of autonaumic abnormalities associated with your POTS in your family history and is there a primary factor causing it or is it idiopathic?

I know familial, and msa are rare and usually noticed in childhood with significant indicators, so Im not questioning those forms, more so I am trying to connect patterns of hereditary traits and eventually find main causes whether they be autoimmune or endocrine etc and find something that fits to present my doctor with. Im having to be my own advocate since nobody wants to dig into this for me. I am waiting for my childhood records, which I am told I was part of a clinical trial and study in the 80s for a cardiologist when I was originally diagnosed. I am hopeing it will hold some answers for me, and until then I grasping for straws..lol

Thanks for sharing if you can.....ohhhhh and Happy Turkey Day tommorrow!!!! {{{{HUGGS and BLESSINGS}}}}

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I have worked on my family history and genealogy for 35 years after being given my grandmothers and grt grandmothers research. In the late 1980's and 1990's I built several large cardboard boxes of data into a software program. One thing I noticed was they did have a lot of medical information on family members and most which was of the recent 75 years also having death certificates.

I did add all this too the program and have used it many times in searching out items at other family members request.

I have found that almost every family has unique issues related to certain health or illinesses and life expectancy. I have completed research on all my ancestoral families including my wife families as well as far back as possible.

On my Dads side, some things I have found are; the male midlife type II diabetes came into the family by my 3rd grt grandmother paternal side (Irish), late life genetic parkinsons (80's) came into the family by my 2nd grt grandmother paternal side (french), and EDS classic or joint hypermobility came into the family thru the very father of the one who started this family history/genealogy my grt grandmother Dad's maternal side (prussian). It is interesting to note that EDS & POTS has been traced to cousins out to 4th and 5th cousins. EDS Clc or JH seems to be active in quite a few of descendants of this line but POTS is rare but does show up interestingly as both Low Blood Pressure or Low Flow POTs and Hyper POTS, equally mixed but in all cased EDS as the primary.

I will give you an example: I have 1 dau. and two sons, all show signs of EDS, but only one has NCS/POTS and his EDS is quite severe, my younger brother has 1 son and 4 dau's and only one dau. has signs of EDS and also has NCS. My 3 other syblings have not passed on or it is not obvious that it has passed on as of yet. Also in all cases the later children in all families have had EDS in prior generations, with the exception of grt grandmother and her sister both who had severe problems with EDS. I must point out that it was not called EDS with grandma and grt grandmother but was called life long rhuematism. Grt grandmother sister did die very young at age 27 and the cause was listed as rhuematism/soilders heart, other wise and very interestingly most of the family members with EDS usually lived well into their 90's out living all other family members by 10 to 15 years, though with a lot of pain and suffering :-(. Dad has EDS and did have problems throuhout life with NCS, and he is 85, and his sister had EDS and passed on at age 90, also to note that both have or had parkinsons.

My Great Grandmother both her and a younger sister had EDS, the brother who was older did not pass on into his descendants EDS. Their father (my 3 grt grandfather) and his brother descendants both have passed on EDS into their descendants, but all their other syblings did not. These two sons are from the first wife, and their mother died very young (early 30's) as did the other 3 children. EDS has not appeared in any of the children from the second wife, which may allow me to assume the first wife was the one with the defective EDS gene? I do know and talk to some of the cousins and half cousins out to 5th cousin on this line of descendants, thanks to grandmother and great grandmothers research work and good records!

I hope this helps you in understanding what the genes do in our lives!


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While my son is the only one diagnosed with POTS and MCAS, my daughter had a TTT a week ago(still waiting to hear results). I had minor symptoms from teens through very early 20's and my mother had a lot of symptoms but no diagnosis since we were both very functional. Migraines and hyper mobility run in the family. Also, my mother didn't sweat and my son has issues with that as well.

If my son wasn't so severe we probably still wouldn't know that all the 'quirks' were related.

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My Mom was diagnosed with POTS and OI last year at age 50 from Dr. Goodman. Hers started much later in life than mine and she is not as bad as me (can still drive and work). However, she has some major autoimmune issues such as crohns disease. They though it was just ulcerative colitis and removed her colon years ago but.it spread to her stomach. She has had over 20 surgeries for various reasons. My brother and uncle also have ulcerative colitis, so IM just waiting for that fun to hit me too.:/

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Thanks for your posts, I am coming to the conclusion I have inheritaed a predisposition to my POTS since its been since childhood and I dont thinks its idiopathic in nature, though "what" or how is such a mystery.

I had about 7 years with hardly any symptoms , atleast not any that disrupted my life, I ran miles everyday, ate well, didnt drink and bam, one day at the gym palpitations and fatigue and my bp became hyptosensive again like when I was a kid.

I am just so desperate to get this pinned down so I can start treating it more effectivily. I have gotta be able to leave my house one day and get back to work =( I have ruled out a lot and thinking I have hypo pots but with some hyper symptoms(quite a few)

I still have a gut feeling theres more to this, being that I have horribly low cholesterol, pottassium, bp, magnesium, preterm births, horrific headaches, considerable memory loss and neck pain... as well as a suspicous family history...

I wish I was as intellectual as some of you guys are , some of the posts take me hour to interpret the meanings lol and my docs are throwing pills at me and I dont honestly think they even know what for... :( sorry just venting now lol :rolleyes:

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I don't know much about my parents, but I do know that my grandma (on my mom's side) had a disorder called Idiopathic Thrombocytopenia Purpura, which was basically an autoimmune problem where her body would destroy it's own platelets. Not sure if this has anything to do with my POTS issues or not. I have one brother, two years older than me, and he doesn't have any health issues at all.

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