issie Posted March 18, 2012 Author Report Share Posted March 18, 2012 Thanks Jen, you're a very special lady and I hope you are going to find the answers to the complexities that you experience. You inspire me and I'm glad I can be there for you. Maybe, one day, we will meet - then we can hug in person!Issie Quote Link to comment Share on other sites More sharing options...
jenglynn Posted March 18, 2012 Report Share Posted March 18, 2012 BUT- I'm not going back on my original point- because I have (according to the DOCTORS, not me) completely confused them- and given the strong family history we have of connective tissue problems (some resulting in death as in my grandma, her dad and uncle- all in 50's or their early 60's), all fainters, all have other neurological problems as well ( one example- not sure about my great grandpa- but my grandma, myself and daughter ALL had/have constantly dilated pupils all the time). That is one example of many more I won't bore you with. I'm the only one as yet who has tested positive for an Autoimune Disease, but my grandma was not tested and my daughter hasn't been either (yet). So far, the only two connections are autonomic and connective tissue. I'm not stating any fact, but I'm saying that the similarities between the three of us in three different generations is of great concern to me as a mom, because I'm currently completely debilitated and will have cognitive dysfunction from multiple brain injuries for the rest of my life due to the multiple syncope I have, often with no warning. If there is even a REMOTE possibility that this could happen to my daughter, I would like it explored because I see way too many warning signs to ignore as a responsible parent who LOVES my child and would do ANYTHING to protect her. THAT is where I am coming from, not really science but common sense and telling science to prove ME wrong then!Jen Quote Link to comment Share on other sites More sharing options...
jenglynn Posted March 18, 2012 Report Share Posted March 18, 2012 Issie,It would be AMAZING for me to meet you in person. I would consider it an honor. I have NO idea how I inspire YOU... I feel I just somehow manage to get through the days, but if I do in any way, I'm grateful. You help so many people on this forum and your kindness, compassion, and empathy literally shines through in every post. People like you are the ones who help us cope with illnesses such as ours. I don't understand it. No one seems to. Every visit leads to more questions than answers. Just like every test. Doctors look at me and shake their head, say I'm a mystery, they are baffled, but we won't give up. Yet, they go home healthy, and I crawl upstairs to my bed to wait and wait. Not that I resent the medical community, but I am so tired of wasting away and getting worse and worse when I think maybe more aggressive action should be taken. I feel as if that fight in me has faded, but I need to find it again. I'm under 100 pounds and emotionally and physically withering away- my body, my brain and spirit. All I want is some HOPE to grab onto and I have a follow up at Mayo on Wed. March 21st- they decided to see me sooner- and I just pray that I get that hope on Wed. I need it now more than eer.Thank you again, Issie. You are certainly a treasure among treasure.Jen Quote Link to comment Share on other sites More sharing options...
issie Posted March 18, 2012 Author Report Share Posted March 18, 2012 Jen, you bring me to tears - thanks again!!!! The journey isn't over yet, hold onto your seats because the ride isn't over. Hoping for answers for all of us!Issie Quote Link to comment Share on other sites More sharing options...
Annaliese Posted March 31, 2012 Report Share Posted March 31, 2012 http://www.ednf.org/index.php?option=com_content&task=view&id=1490&Itemid=88888988 Quote Link to comment Share on other sites More sharing options...
issie Posted March 31, 2012 Author Report Share Posted March 31, 2012 Thanks for the link Annaliese. Seems so many of use with EDS have autoimmune issues and connections with MCAD issues. Issie Quote Link to comment Share on other sites More sharing options...
issie Posted March 31, 2012 Author Report Share Posted March 31, 2012 We talked about magnesium earlier in this thread - see the thread I started on magnesium. Some forms of them can cause depression and some people have issues with calclum causing depression issues and all kinds of other problems.Issie Quote Link to comment Share on other sites More sharing options...
issie Posted April 19, 2012 Author Report Share Posted April 19, 2012 Bump up - due to connections with another thread on auto antibodies to angiotensin II and pre-eclampsiaIssie Quote Link to comment Share on other sites More sharing options...
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