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612876 tn?1355514495

Roll call!! Please take a moment to introduce yourself...

Hi. I'm Heiferly and I'm the CL (Community Leader) here in the Dysautonomia forum. (I'm also co-CL of the ostomy forum, so if you have questions about enteral feeding or stoma care, that's a great place to ask.) We've recently had a high turnover rate of new people here, so I though it would be a good time to ask our community members, old and new, to do some introductions. Things you may want to include are: your main diagnoses pertaining to dysautonomia, other major diagnoses you have, how old you are, and how long you've had (or suspected) dysautonomia. Feel free to also include information about your family, pets, and hobbies to help everyone get to know you.
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612876 tn?1355514495
I feel horrible. I've been keeping up with your "case"  .... or so I thought ... but somehow I missed or forgot that you'd been bitten by a tick. I'm sending you a PM right away to discuss this in confidence. I hope to hear back from you soon. <3
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Avatar universal
Hi everyone, first off I just want to say I think it is great to have this forum. Support and advice from people who feel your pain is very comforting.

I am 22 years old and live in Canada. I have POTS,bad headaches,and vision loss in my right eye which is still being explored.

I became very ill the end of August. I was pretty healthy prior to this and it came on within a few weeks. The only thing I can think of is that I had a tick on me.

Prior to being sick I had a full time job as a childcare teacher. Now I am unemployeed. I was on sick benefits but that has run out so I am looking into perhaps short term disability.

I am not willing to give up to this yet.I am demanding tests and trying things that may help me feel better.Like magnesium, compression tights,and trying to build up strength and eat better. I just wish I knew.."why me".

I hope some of you will introduce yourselves..after all..we are all in this together.
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612876 tn?1355514495
Bump
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612876 tn?1355514495
So, like I said, I'm a CL here on MedHelp. I'm a 35 year old woman who is married with no children but my furbabies: a black lab service dog and a papillon/jack russel mix. I have had dysautonomia and have been fully disabled (on SSDI) since Aug 2006. Prior to that, I had a career doing 1 on 1 instruction with children with autism. I have too many diagnoses to list, but the "big" ones are:

-Generalized Dysautonomia
-Narcolepsy with Cataplexy
-Gastroparesis and Intestinal Dysmotility
-Chronic Hypovolemia
-Traumatic Brain Injury (with memory impairment)
-Clinical diagnosis of Mitochondrial Disease
-Myofascial Pain Syndrome and Visceral Hyperalgesia

I'm a "tubie," which is to say I rely on a feeding pump and a feeding tube for my nutrition. I also have a central IV line in my chest called a "port" which is used for hydration and blood draws, and occasionally for medications. My hobbies are scrapbooking, playing video games, reading, watching movies, and taking naps.
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