luckygoat3

as a dyna member myself, this is a very good lecture, if you can't make it we have last year's on video, if you want to order that. I think this year we are taping it also.

susie

Well, i went to the family doc and he gave me a couple scripts, but as he said there is no cure for this, just medicines...but the way i react to meds makes him a little scared i think. so i will go back in a month and see him again. i was on the floor cuz the sitting on the table made me dizzy and i was rocking back and forth and he had a med student with him.

susie

the pharmacy dude said one lady goes to cleveland clinic and gets little to no relief...

ernie,

i graduated HS, i wore a girdle (a very tight one i might add) and very very tight pantyhose. i was constantly moving when standing, my legs mostly.

susie

Do i need to say more, headache unbearible...taken pain killers and nothing has touched it yet...any suggestions?

susie

goldicedance i got a chunkle with your joke.

Grubb is about an hour away from me, a waste of money the last time, my appt is in dec, in the morning i think the first ones but not sure.

susie

Hi all,

I was wondering if i should see grubb again he barely spent 10 minutes with me at my last appt, he is good for the diagonses and explaining it but his follow-ups stink. what do you think?

hi, you might want to check out www.dynakids.org, that is a website devoted to kids and young adults with dysautonomia.

susie

dyna member

thanks all i wondering even platelets as they take like over an hour but they return your blood back to you minus a few platelets. i don't have a fear of needles anymore, i give shots to animals and don't mind the needles coming at me either, but this is something i have wanted to since i was 15, believe it or not. so it was just an option....

thanx a bunch

susie

Okay what do you expect when you go for a mental status check?

Just wondering can a person with dysautonomia donate blood or platelets? I am currently on meds but i want to know if i can....

thanx

susie

Just wondering what to take and what to expect out of this SSI doctor exam?

any help would be wonderful.

(i hate going to docs offices that i don't know....)

susie

I am a young adult in DYNA. Debbie told us older DYNA members about DINET. I think the way she explains POTS is very good. I know that it really helped me to understand that no matter what a person has...dysautonomia or not...there can be a different level of functioning and a different degree of illness. Debbie works w/ her medical advisory board of physicians before putting anything up on the DYNA site regarding the health aspect. She also explains everything to us kids in terms we can understand. A lot of what is on the DYNA site is to get the schools to understand us kids. Teachers tend to brush us off as not being sick and as faking and it is a tremendous problem getting support from our school systems.

susie

OH the PM is much better for me!!!!!! sometimes the am if i drink a can a caffine, but we have a standing joke in this house i move like a turtle a the mornings.

susie

Hi all,

I haven't posted in a LONG time but I read every so often. TO refresh your memories of me I am Susie, I'm 18, and umm have OI and NCS.

Anywho, I know all about this medical coverage crap! I maybe young, but since my parents who are both self employed, they have to pay for there own health insurance which in turn includes me and my brother. Well we had a good insurance company until i think 2 yrs ago, when they went bankrupt. So we went searching but nobody would take me and the local HMO didn't have open enrollment for 6 or so months. The ones who would take me were an arm and leg. So for 6 months or so I drift with no medical coverage, and yes my parents were paying for the scripts. anywho, the local HMO sold out and now they have some crappy provider now, we only can have up to 50 grand in claims! I mean if i spent 5 days in the hospital i am screwed. so now we are looking into getting medicad and social sercuity for me as i can't work.

just thought to let ya know you aren't alone.

Susie

Hi everyone,

My name is Susie, and I have NCS and OI, now don't I sound like I am at an AA meeting. Anyways I am 18, graduated HS in the spring of this year. YEA! Thanks to my awesome tutor for three years. I was diagonsed almost five years ago...can you believe that one?

Just wanted to say HI to everyone.

susie