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Introducing myself


OCsunshine
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Hello everyone,

My name is Rachel and I'm so happy to have found this discussion group! I have been part of a CFS list-serv for years, and am thrilled to find discussions more focused on the Orthostatic Intolerance.

A little background: I am 24 years old, living in Maryland, USA. I was diagnosed 11 years ago with CFIDS and NMH (Neurally Mediated Hypotension). My doctor is Dr Peter Rowe at Johns Hopkins, he did the tilt table test and I scored positive (ie, went unconscious) within 30 seconds of being upright (lucky me).

I hope it's okay if I become a part of this discussion group, even though I don't have the POTS diagnosis. Everything I am reading just sounds so similar to NMH! Pretty much the same symptoms and the same treatment plans.

My level of activity has gone from being totally bedridden for months and months at a time to being active and being able to work part-time. My health fluctuates throughout the year, depending on the seasons/weather and what viruses/illnesses are going around (I catch everything, and it takes months to recover).

I am always interesting in learning more about these illnesses and it's so comforting to 'meet' people that are dealing with the same obstacles.

Sincerely,

Rachel (aka OCsunshine)

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Hi Rachel! Welcome!

It sounds like you'll be in good company. I'll be 22 in Sept; I started having POTS & CFS symptoms last April (2004) and after finding some effective meds this past April, I'm now gradually improving. So far I've mostly had the low end of things :P , and am finally starting to enjoy the upswing. :)

Hope you find our little forum helpful! I'm glad to meet you!

Angela :D

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welcome rachel

my name is sallyann, i also live in maryland. i am 42 years old and have been dx with pots,ncs,cvs. i have a 16 year old daughter who also has same dx as me , with the wxception of cvs. both of us have been bedridden at times , lately my daughter is doing very well.me not so good.we both chose to change our lifestles to try to maintain our symptoms ,and for the most part that works very well.i lok foreward to reading your post.

sallyann

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Welcome! I am 23 years old and was diagnosed with POTS 4 years ago. I was bedridden for about 6 months at the beginning but after my first pregnancy in 2002 and another this year, I am almost completely functional again except for chronic fatigue type symptoms and tachycardia. I live in Florida which I think has helped because there isn't such a large fluctuation in temperature here. Hope to see you around a lot- in good health!!

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hello rachel!

welcome! i am so glad that you found us! i'm 29. i just needed to say that, b/c i will soon not be a 20-something. so i won't fit in with the rest of everyone who just chimed int with the i'm 20-this-or-that!

what things has dr. rowe found to work for you? do you see him often? have you been happy with your care from him? i am glad that you have found so much improvement. i know it's not ideal, of course, but it sounds like quite a big step from where you were!

there are sooooo many wonderful people here on this forum. i can't gush about it enough. i love this place. it's like home. you'll find lots of support, information, and friends. so many of us have much in common beyond what our OI, which brought us here originally.

looking forward to getting to know you more...

later alligator!

emily

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Welcome Rachel,

I live in NY. I also have different symptoms going on at different times. I was diagnosed with dysautonomia at the MVP/Autonomic Center in Ala. years ago. Getting help here is another story. Go through good times, go through bad times. Since last Nov. the bad times have hit and still are going strong.

Hang in there and welcome once again.

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Thanks for such a warm welcome! How nice!

Now I feel right at home here, and I am learning a lot just by reading the various posts on all of the topics. I am certainly enjoying it and keeping up the best I can. :)

Emily was asking about Dr Rowe. Have you heard of him? He is famous all over the world and is just a super doctor. I have had a wonderful experience with him- I was one of his very first NMH patients! He has found a very successful treatment plan that consists of medicine (atenolol, florinef, k-dur), every-day tricks (wearing constriction hose, drinking tons of water, salt tabs and gatorade, keeping my feet tucked up when I sit down, doing gentle stretches and exercises, etc...), and finding other doctors who are local and can help me out. For example, I saw an "Osteopath of Neurology" for a few years who was awesome, and worked out the narrowing of my spine (cervical stenosis), which alleviated several symptoms.

Dr Rowe has always been very open-minded and responsive (I can email him with a problem or question and he will respond with the day, or if I have an emergency I can page him and he responds within 5 minutes!), and he is a very caring and intellegent person. I just can't say enough about him!

If you would like to read an interview with him, here is a link (it's great info on NMH and CFS).

http://www.abc.net.au/rn/talks/8.30/helthr...ies/s828404.htm

Thanks again for all of the warm welcomes... I am looking forward to getting to know all of you!

Sincerely,

Rachel

emily wrote:

what things has dr. rowe found to work for you? do you see him often? have you been happy with your care from him? i am glad that you have found so much improvement. i know it's not ideal, of course, but it sounds like quite a big step from where you were!

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hi rachel-

welcome! i'm glad you found us, too:-) and yes...of course you're welcome here; like others have said, the forum is for all types of dysautonomia (although you'll find the majority have NMH/NCS &/or POTS, with some having PAF or an unspecified type too...) as you've noticed, there is a LOT of overlap between the "categories" and some of us have multiple diagnosis either now or over the years. there is lots of good info on the site & great people to go along with it...like em, i could get mushy but i'll hold myself back :)

i'm 25 and have Autonomic Neuropathy, NCS/NMH (diff names, same thing), POTS/OI, & other autonomic-related issues including a neurogenic bladder & gastropareis/ slow GI motility. (some other things too, but not so autonomically-related). i was diagnosed with NCS/NMH in 97 and other things have followed from there with lots of ups & downs over the years (literally & figuratively :) ), ranging from being bedridden &/or hospitalized to being able to attend school full-time & playing varsity sports. i've been on a not-so-good run since november etc. with things other than my BP/HR being more affected but am actually going to give grad school a start this fall (er...tomorrow!!) it's a long shot but i have to try.

i actually just moved from maryland at the end of july after being there for 8 years. i'm now in ohio, which is where i grew up; i needed to be closer to family after all the craziness of this year. i have been to lots of docs from ohio to baltimore to nashville - good and bad. i'm so glad to hear that you're hooked up with a good doc...that makes SUCH a difference, even when things are tough.

again, welcome...

:) melissa

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Rachel

Welcome aboard. Don't worry about your diagnosis there are others here that don't have POTS either but other forms of dysautonomia. You will get good advice and inspiration here. I'm sure we can learn from you too since many of us have also been told one time or another that we have CFS.

Thx for the information about Dr. Rowe, he sounds like a wonderful man.

See you on the boards :)

Steph

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Hi Rachel,

Welcome to the forum! Glad you have good medical support. I'm 24 with POTS, MCS (multiple chemical sensitivity), IBS (irritable bowel syndrome)...those are the biggies. I've been a graduate student for the past few years but have been sidelined this summer with POTS. This is a great place to get information and support. I'm glad you found it.

Kristen

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Hello Rachel,

I'm 29 and have POTS, I just joined alittle while ago, and it has been great. :)

Welcome :blink:

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Rachel,

I would like to welcome you and let you know it is always nice to meet new people. I hope that we will be able to help you through support in good times and bad. The people in this forum are always open minded and ready to listen or pitch in for advise when available.

Welcome,

Rita s

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Rachel,

Welcome to the forum! We are glad to have you!

It really sounds like you have an amazing Dr.!

We hope to be a help to you,

Lisa

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Hi Rachel,

think I'm a bit late, but wanted to welcome you in our very special dysautonomia world! You'll find a lot of caring people here (from all over the world), willing to answer questions and help eachother whenever they can.

I'm (still) 41 (want to feel like in my 20's, but often feel like I'm in my 90's :D ), I have a fantastic husband and together we have 2 GREAT son's (14 and almost 11). I'm from the Netherlands and was soooooo glad my husband found this forum for me!!!!!!!

Corina

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