juliegee Posted December 21, 2011 Report Share Posted December 21, 2011 My MIL recently passed away & I've had the opportunity to spend some quality time with my husband's family members. I had always heard that one of my husband's first cousin's had a daughter, who is consistently described as "sickly." Well, she has almost identical symptoms and a diagnosis as my son. (They are 2nd cousins.) This sweet young lady has EDS, NMH, GI motility issues, and possibly MCAD. What are the chances???I had always suspected that my husband had some of our stuff. He has VERY loose joints and has had several subluxatuions/dislocations. He does faint at the site of blood or even when anyone uses medical jargon that he considers gory - this is a common symptom of NMH. He was very fatigued as a teen and young adult. Between faints or dislocations (VERY few and far between) he is perfectly fine, extraordinarily healthy whereas day-to-day my son and I struggle.Keep in mind that MANY of my family members are also affected. So, poor Mack (my son) definitely gets it from both sides, which may explain the severity of his symptoms.I did NOT marry a family member What's the deal- are we attracted at a cellular level to people like ourselves? Bizarre. Quote Link to comment Share on other sites More sharing options...
Csmith3 Posted December 21, 2011 Report Share Posted December 21, 2011 It's interesting isn't it - how events can suddenly make us realise the extent of the illness/trigger factors in other family members. I am sorry it was connected with your MIL passing away.A rheumatologist once said to me that I showed signs of two connective tissue disorders. I didn't thing too much of it at the time, but now I can see that many of my father's side of the family side have EDS and my mum probably has mild-Marfans or something similar. As you say, it is the mix of genes which is unfortunate in the next generation.Maybe in years to come there will be genetic testing before marriage! Quote Link to comment Share on other sites More sharing options...
arizona girl Posted December 21, 2011 Report Share Posted December 21, 2011 Hi, macks mom, Sorry about your MIL. You I wonder if we have this instinct where we recognize similarities without being aware. I grew up with my father doing funny things with his double jointed thumbs. Guess what I married I guy who has double jointed thumbs! Hope your doing good! Interesting how there has been a lot of posts about mcad and ivig lately! Quote Link to comment Share on other sites More sharing options...
juliegee Posted December 22, 2011 Author Report Share Posted December 22, 2011 Hi AZ gal-Yes, lots of posts about both (IVIG & MCAD), but not linking them- right? Just want to make sure I'm not missing something I saw in another post to Rama, you indicate that there is a link between hypogammaglobulinemia & small fiber neuropathy. I'm sure I have the latter too, just haven't bothered with the testing. How are they connected? Thanks for sharing your wisdom. SOOOO happy IVIG is helping you Julie Quote Link to comment Share on other sites More sharing options...
abnel Posted December 22, 2011 Report Share Posted December 22, 2011 I've also wondered Julie if like attracts like.When I first met my husband 10 years ago he had very strong symptoms of Chronic Fatigue Syndrome but was never officially diagnosed. I could never truly understand his lack of energy when I had so much and could go, go, go all the time. Now I have POTS I truly understand what he was going through. He is also extremely flexible as is his mother, so I am positive they have some kind of connective tissue disorder which accounts for their bouts of ill health, CFS like symptoms at times, and general fatigue.My mother is currently doing genealogical research which I have been helping her with. We are trying to order in death certificates to see cause of death. We are looking for anything such as "neurasthenia" as we're trying to explore whether there could be a genetic basis for my POTS. Unfortunately they didn't seem to put general health complaints in death certificates in the past, only the actual cause of death which is often heart attack or some kind of acute illness. Quote Link to comment Share on other sites More sharing options...
PotsMom Posted December 22, 2011 Report Share Posted December 22, 2011 This is an interesting topic because it is one I've mulled over quite a bit. There is no doubt in my mind that my two kid's severe POTS/CFS, or however one wants to classify it, has an autoimmune basis as autoimmune conditions are absolutely rampant on the maternal side of my family. In addition to that, my Mom has also had mild signs of OI for years, I have occasional symptoms of OI and was very sickly in the preteen/early teen years and fainted several times, etc., and my sister's daughter at 13 is now beginning to have mild symptoms of OI. It is clear that there is a huge hereditary component for my kids but I have often wondered why it is that they got hit so severely. My husband's side of the family has a history of being incredibly healthy, so I had never even glanced in that direction. Then about three years ago my husband began having problems and was diagnosed with an autoimmune problem of the trachea. I have found it very interesting as I can't help but wonder if the collision of autoimmune issues from both sides of the family at least contributed to the severity of my kid's conditions. No way to know of course but definitely interesting and reading this thread makes it interesting indeed. Quote Link to comment Share on other sites More sharing options...
crowebirds Posted December 22, 2011 Report Share Posted December 22, 2011 Well, been gone awhile, decided to pop back in and check on everyone. Not long after my MIL passed away did we make the connection between her "sickly" issues and my daughters. However, I have begun noticing and remembering that I have a lot of the same symptoms as my daughter, but much milder. The symptoms I don't have my MIL had. We have also discovered that my FIL was most likely marfanoid. When I was dating, I remember wanting someone just like me, not my opposite, that way he would understand why I never had energy and was always tired. I married him, though he doesn't have the symptoms, he understood because of his mother's illnesses. I have wondered if the combination of our two families is what made her condition so much worse. ~~Very interesting! Quote Link to comment Share on other sites More sharing options...
POTSMama Posted December 22, 2011 Report Share Posted December 22, 2011 I think there may possibly be a genetic component in my family too, although different than some others here because we do not have hyperflexible joints/EDS. But there seem to be a lot of autoimmine disorders and dysautonomia symptoms particularly on my mother's side - - although she passed on last year without a POTS diagnosis (she was 88 and had a number of problems including atrial fibrillation, osteoporosis, severe arthritis, vasculitis, and Sjogren's syndrome), I am convinced that she had a milder form of POTS than I do based on her symptoms over the years. Her sister, my aunt also showed mild POTS symptoms. Then there's the fact that my uncle on my mom's side (her brother) had Parkinson's and my brother was diagnosed a while ago as early onset Parkinson's. So it's almost like the women in the family have POTS (mine is hyperadrenergic) and the men prone to Parkinson's. Anyone else with Parkinson's and POTS symptoms in ancesters/genetic family members?My dad's side of the family shows no issues, but my brother and I both look more like my mom and haver her personality. My sister on the other hand looks like my dad and has his personality, and she is healthy as can be. Now I believe I've developed MCAD, although noone in my family on either side (as far as I know) showed signs of this. I worry about my biological daughter (my other two are adopted) as she seems generally healthy but has weird food allergies and I wonder if this is a sign...and she looks like me and is similar in personality aspects. My husband, her bio dad, is Type 1 diabetic and has eosinophilic esophagitis (allergies to certain spices and foods), but otherwise nothing obvious on his family side.Carol Quote Link to comment Share on other sites More sharing options...
PotsMom Posted December 22, 2011 Report Share Posted December 22, 2011 Carol,Your family history has some similarities to mine. My Mom's dad had Parkinson's and her sister we think also has Parkinson's. My Mom and each of her siblings have at least one major autoimmune disorder. My Mom has severe problems with Sjogren's as well as arthritis and fibromyalgia. Based on symptoms, my sister and I both most likely have early Sjogren's... As mentioned previously we also have other very mild dysautonomia in the family. My brother also undoubtedly has CFS (not known as yet to be autoimmune of course but with family history like ours I have to wonder...) Then there's the fact that my hubby also has autoimmune disease. Family history is a topic of great interest to me - I have long wished for some studies of dysautonomia/CFS that focus on family history. I think it would be very enlightening! Quote Link to comment Share on other sites More sharing options...
icesktr189 Posted December 22, 2011 Report Share Posted December 22, 2011 My mom has Crohs disease and was diagnosed this year with POTS. There is definently a genetic factor and I think its autuoimmune Quote Link to comment Share on other sites More sharing options...
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