firewatcher Posted January 24, 2010 Report Share Posted January 24, 2010 I just assumed that everyone found this place through endless searching of our crazy symptoms. Curiosity....... Link to comment Share on other sites More sharing options...
erickamcc0523 Posted January 24, 2010 Report Share Posted January 24, 2010 I actually can't remember how I found DINET, but I think that I was on wrongdiagnosis.com, and out of sheer serendipity, I found a post on their fourm about POTS... I followed the trail, and found this forum and website. I can't express in words (especially with a brain fog in full effect right now) just how glad and overjoyed I am to have found this site... I know the fact this exists, though, means that others are dealing with this illness, too. But for better or worse, I am glad to have you guys! I have a great in person support group, but none of them are sick like this, so they don't really understand. When I ask, "You know what I mean?" and they give me a blank stare, because they don't know what I mean. Here, the answer is, "Oh God, yes, I do, and I'm so sorry you have that, too!" Link to comment Share on other sites More sharing options...
tinkerbella Posted January 24, 2010 Report Share Posted January 24, 2010 My plummy doc came here to find a neuro for me after my cardio advised me to come here to meet others and use the forum to learn as no books were out on the subject other than medical journals. I've been grateful that I have been able to make friends who really understand what I'm going through and it's has helped me through many a long, lonely day in bed with my faithful loving compaion, my dog by my side. The friendhips that are made here and go on outside of here help me so much with emails or jokes everyday give me something extra to look forward to. Many of you are like angels to me and brighten up my days. My dog he never questions me and loves me unconditionally. I'm so very blessed!!! I thank God that I found Dinet as it feels like home to me and there's no place like home when you don't fit in anywhere else. Thank you Dinet!Love to all~bellamia~ Link to comment Share on other sites More sharing options...
Brye Posted January 25, 2010 Report Share Posted January 25, 2010 I was googling information about POTS and came upon this sight.Brye Link to comment Share on other sites More sharing options...
KristinL Posted January 25, 2010 Report Share Posted January 25, 2010 I too googled "POTS" and this site came up. I did not join the forum initially when I was diagnosed in 2006 but only after a terrible relapse in August 2009. I joined in the forum and only wish I would have done it in the very beginning! I am so grateful that I came back and that you all are here!Kris Link to comment Share on other sites More sharing options...
flop Posted January 25, 2010 Report Share Posted January 25, 2010 I didn't find this website until a couple of years after I was diagnosed. When my symptoms got worse (a flare up) I went googling for "postural orthostatic tachycardia syndrome" and found DINET. I learnt so much here.Flop Link to comment Share on other sites More sharing options...
iheartcats Posted January 26, 2010 Report Share Posted January 26, 2010 When I was diagnosed, I'd never even heard of POTS. My doctor said there were support groups online so go Google and find one and read more about it.I just couldn't believe something was called POTS and I had it. And here I am. Link to comment Share on other sites More sharing options...
MommytoSJEA Posted January 26, 2010 Report Share Posted January 26, 2010 My cardio openly told me he basically knew jack squat about POTS and to go to this web site. And that the people here could help me more then he could. And you all have ~Kelli Link to comment Share on other sites More sharing options...
Chaos Posted January 27, 2010 Report Share Posted January 27, 2010 When I got sick (most recently) and the doctors kept running tests upon tests upon tests with no answers I kept searching for info on SOMETHING that would explain all my wacky symptoms. My husband kept insisting I should be tested for lead poisoning because of all the herbs I've taken over the years. (Herbs that I took to help deal with all my wacky symptoms even before this last big flare up). Anyway, just to appease him and out of desperation I did search for lead poisoning symptoms, which brought up dysautonomia. Since I wasn't sure what that was exactly, I googled that and then one thing led to another and I found this site. I was so excited when I found all the info on Dysautonomia and POTS that I stayed up most of the night looking for everything I could find. I told my husband the next morning what I had found. His initial response was "well I'm sure lots of people diagnosis themselves- incorrectly- from info on the internet." Then I showed him copies of several articles I had read and he was AMAZED and his response changed to "WOW that describes you exactly!!". Link to comment Share on other sites More sharing options...
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