DizzyGirls Posted June 3, 2015 Report Share Posted June 3, 2015 I had a good day last Friday. I just thought I would share it. I thought that the only people I would ever meet with Dysautonomia and Ehler's Danlos Syndrome would be on the forums that I started frequenting at the advice of my mom's pain clinic doctor. These illnesses are supposed to "rare" as the doctors would have us to believe, and we all know that doctor's with any expertise in these illnesses are even rarer. I have to say to these doctors, 'THIS IS NOT THAT RARE! JUST LISTEN TO US!!But....through a strange chain of events, a janitor and the guy with the office next my husband's.... we found out that (the guy with the office) his 21 year old daughter has EDS and POTS. He was merely 20 feet away for the past several years. So, the husband's decided that it was best that the wives talk (we agreed!) and so the wife and I met for coffee and discussed our daughter's symptoms spanning the past 10 or 20 years (depending on which one we were talking about). Through this conversation we found out that her boss's son was just diagnosed with POTS a few months ago! I thought this was supposed to be "rare". Two local people in one day, who knew?! Before discovering my new friend, I had spent the past week researching doctors, POTS and deciding to go for an appointment at Stanford at the Autonomic Disorders Clinic. My friend's daughter and her boss's son both go there and have been pleased. It is always such a process to get into places like this. It takes months to get in, nevermind all the paperwork from the PCP and additional appointments to update the clinical notes (or you'll never get in!). Then, you need to get it through the insurance. Mostly what she had to say was the same thing that I've learned here: the salt tabs (Thermotabs is what she uses), compression pants, Smartwater (my 19-year-old is drinking me out of house and home!) and the miracle drug Florinef. It was so encouraging to hear that their daughter was in bad shape and the right doctor with the right medicine and a host of OTC ideas could give her life back. She is able to go to college and is planning a trip to Hawaii soon. I don't expect that drastic of results with my daughters, as they are on the extreme severe end of the spectrum. But, if they could get out of bed (without taking all day to do it), be able to read a book (without vertigo), go to a store (without spending the next few months recovering), or take a shower (without feeling like they were going to pass out)...it would be a miracle! Until then, we will work on getting in to Stanford and educating doctors on the way! Quote Link to comment Share on other sites More sharing options...
Katybug Posted June 3, 2015 Report Share Posted June 3, 2015 DizzyGirls, I'm glad you were able to find someone else to add to your support network. That is so important for both patients and caretakers.Katie Quote Link to comment Share on other sites More sharing options...
SarahA33 Posted June 4, 2015 Report Share Posted June 4, 2015 Hi Dizzygirls! That's great that you were able to talk with someone who understands, my friends who have dysautonomia have become an extended part of my family, We have compassion and understanding, and are there when it counts. It's a wonderful thing, as you mentioned, the rare nature of these conditions may leave people feeling isolated. I'm really happy you were able to meet for coffee! Also, best of luck with the doctors at Stanford. Sarah Quote Link to comment Share on other sites More sharing options...
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