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Hi Everyone,

My name is Gwendolyn, I'm turning 17 on September 9. :) In November of 04', I passed out in my gym class and was sent home from having low blood pressure. My family doctor did his own version of the TTT and told us that I had NCS. My FD ordered a ECHO, and then a TTT at our hospital. It came back positive...plus an increase of water and salt. For the first month or so it worked. Then in December I went down hill. I began loosing weight, (20 pounds in two weeks) I was throwing up basically everything I ate.

I was failing most of my classes and the ones I wasn't failing yet, my grades were on the verge of becoming D's. I was extremly tired and by the time I would get home from school I would crash. On top of that I was in marching band which for my school is VERY active and competitive.

We finally found a Pediactric Cardiologist who specializes in POTS. He diagnosed me with POTS, and put me back onto Florinef, .1mg 2x's a day. He sent me to a geneticist, a physical therapist, and a GI doctor...all who have are very experianced in POTS!!! My GI doc appt. is coming up this coming Wednesday. I feel A LOT better now from being sent to the physical therapist! I am so lucky to have found him.

:lol: Hope to hear from some of you!

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WELCOME GWENDOLYN!

I love your name! I am sorry you are going through this at such a young age. I am grateful that you so quickly found such fantastic help--it sounds like you have a fabulous medical team. Hurray!

What instrument do you play??? I was a big band person...played sax! :)

Emily

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Welcome Gwendolyn! Thanks for sharing your story. That's wonderful that you are getting the help you need from your health care providers- it can be tough to get adequate care these days and those who can are so lucky. Sorry that you have dysautonomia but glad to have you join us!!!

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Welcome to our forum. We're practically neighbors :) I'm just outside of Philly and attend Temple University--I also work in Bucks County in the public schools f/t.

Nina

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Hi Gwendolyn!

My name is Rachel and I live in Maryland. Nice to meet you!

I am 24 and was diagnosed with NMH and CFIDS when I was 13. I'm so glad you joined the board! I am also a newbie, just joined about a week ago. This seems like a great place for support!

Sincerely,

Rachel

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Hi Gwedolyn,

We're kindof next-door neighbors. We're from the northeast part of Ohio. My daughter is 19 and has POTS. I'm sure she'll love to talk with you. She just moved into her dorm room today and her computer's not set up yet, but once it is she'll be back on the forum!

Good Luck and soooo glad you've found some great Dr.'s and PT.

Patti

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Hi Gewndolyn :)

I just wanted to welcome you to the forum..I live in Erie Pa and am 23.. if you ever want to chat feel free to Pm me or send me an email!!

again welcome!!

Linda

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Guest tearose

Hi and welcome!

I too am glad you have good medical guidance and that you found this forum!

Keep hydrated, especially during gym class this semester!

take care, tearose

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hi gwendolyn,

my daughter will be turning 17 in april, she too has pots and ncs ,al;ong with some other things . i will send you a pm with her screen name if you ever want to talk to her . she is doing very well these days . i am glad you found doctors who understand pots . i only live about 30 minutes from lancaster , i would love to know the names of your doctors . i would definitly consider making an appt. i hope your progress continues ,and i look foreward to reading your post.

sallyann

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It is always great to see someone new to the forum, although the reason for being here is not the greatest. I would just like to welcome you !!!!! It is wonderful news to hear that you have doctors who know about dysautonomia. It is very rare to find doctors with this knowledge so I am soooo proud for go!

Nice to meet you,

Rita s

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gwendolyn-

welcome! i'm sorry you have reason to be here but glad you found the forum. there's a lot of good info & some pretty cool people to go along with it.

i moved from just north of baltimore, md about a month ago, so we used to be neighbors...now i'm in cleveland, oh.

i'm 25 but was 17 when diagnosed with NCS so definitely related to your story. i have Autonomic Neuropathy, POTS/OI, NCS, & other related issues and have had a lot of ups and downs - literally & figuratively - over the years.

it's great that you seem to have good health care team to work with...that makes SUCH a difference.

i'm a music-gal too, but play cello & piano, neither of which work too well for a marching band!

i'm glad to hear that you're already on the road to feeling better.

again, welcome!

:) melissa

Edited by Sunfish
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Hi Gwendolyn!

Welcome to our ever-increasing family (lots of newbies lately -- fun! :) )

I'll turn 22 on Sept. 6th (born on the first day of school and went in as my older siblings' show-and-tell a few days later :o ). I was diagnosed with POTS & CFS this past April, although I was in the "everything-going-downhill mode" for a year before that. On the new meds, I'm slowly seeing improvements. I am currently back living with my parents in NJ and studying as much as I can (aiming to be able to go to college next fall -- lots of CFS management to work on, though!)

This forum has been such a wonderful source of medical insight and new friends for me (people who actually understand my medical problems! ;)B):) ) . I hope we can help answer whatever questions you have and give you helpful ideas. Looking forward to hearing more from you! Welcome again!

Angela

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Hello Gwendolyn ;)

Sorry I'm alittle late welcoming, hubby got a new computer last night and this is the first time I could get on.

Welcome. I am also a newbit, just joined at the beginning of the month, was just diagn. last month with POTS.

I was also in marching band and played the flute. I am 29 and live in NE Ohio.

Again welcome

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