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I'm new, don't know what's going on.....


UnicornIsis
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I would REALLY APPERCIATE anything anyone can tell me about any of this. I'm new here and new to my diagnosis. I spent nine months going from doc to doc. My PCP admitted right away that he didn't know what it was and immediately sent me to evry specialist he could think of. So I give him a LOT of credit for that, especially since he works in one of those walk-in anytime "Patient First" deals. I was finally sent to Johns-Hopkins. I've already shown intolerance or not working enough for most of the drugs out there for this. I have NMH-Neurally Mediated Hypotension (or whatever version of the name you want to call it), secondarily POTS and I have Mitral-Valve Prolapse. I was diagnosed at Hopkins the day after I turned 21. Great Birthday present huh?

I live in Virginia, 1/2 way between Richmond and Charlottesville. I want to find someone I near me with this, I'm willing to travel to any part of Virginia for this. Or even just someone I can call/e-mail and talk to about what's going on. I'm sure most of you know that feeling.

I have been told by all of my doctors NOT to drive and the ones at Hopkins said that if I do, they'll report me to DMV for my medical condition!! Do any of you drive with this? I live out in the country so there's no bus to hope on. I'm stuck at home most of the time. I'm weak and tired and dizzy almost all the time, even on the meds.

I've barely been able to find any info on all of this, so any sites, books, articles, etc. y'all want to reccomend I would LOVE. Also if anyone wants to reccomend any doctors I would apperciate that too. I've been told by Hopkins that I might have a connective tissue disorder and I'm trying to find a doc to go to for that. And we've figured out that I do have a milk-protein allergy. I never liked milk, but I'm allergic to everything under the sun, including the sun as my ex used to say, so we never bothered trying to find out everything I was allergic to. But since I've cut out milk, I feel better.

I'm living at home with my parents and 18 year old brother. I had to quit college. Mom and Dad now take turns taking me to a night class at the local CC that they finally agreed to let me do in January, but only ONE class. I can't work, they won't let me drive, I can't go to school full-time. What am I supposed to do? My cat and hermit crabs and computer only take up so much time. I also have ADHD so I get bored a lot and have trouble remembering things.

Oh yeah, two last questions, since this is already so long. I shake sometimes. Hopkins said it wasn't related. But it usually happens when I start getting a bad spell. Do any of you experience this also? Plus, I had a sudden onset a few months after I got non-EBV mono. Did anyone else have sudden onset? The Hopkins doc kept saying there had to be eariler instances that I didn't remember, it doesn't just come on sudden. I did get dizzy easily when I'd stand up qickly as a child though.

Okay, finally done for this one. Thank you just for reading this!! and for being here/existing!!

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Hi UnicornIsis-

Hi. I live just west of Richmond in Midlothian just east of the Powhatan County line near the James River. I was just in Charlottesville on Wednesday seeing Dr. Lawrence Phillips at UVA Medical Center. He is a neurologist with quite a bit of knowledge about POTS, and might be someone you would want to see.

The good news for me is that my autonomic problems seem to be fading. The bad news is that I have another seemingly unrelated symptom (severe difficulty swallowing). There is hope for recovery, though you will no doubt have good days and bad until that happens.

There other members on this board who live on the Richmond area who might be able to relate to your symptoms more than I can. I never had hypotension. I had tachycardia, gastroparesis, and sometimes hypertension. I hope you find the answers you are looking for, and know others here will support you when you are at your worst. Best of luck,

-Dan

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Happy Birthday and Welcome!!

I don't know why it still amazes me at the manners and disinformation presented by some doctors. Sometimes the higher you go up the "specialist" scale the more you run into Father-knows-best one-size-fits-all mentalities. I had a doctor tell me once that if I didn't take Drug X that I would have an attack behind the wheel and crash my car in a huge ball of flames. (OK, he left out the huge ball of flames, but I was terrified .... until I got a second opinion.)

There are certainly those of us who drive ... and times when some of us can't drive. But most of the time ... we know when those times are. Being diagnosed at 21 can be a blessing ... you don't need to spend the next 20 years questioning your sanity. And you don't need to spend all your life/time painting shells for your hermit crabs. Though that can be fun.

You'll find that you have good times (days, weeks or hours) and more challenging periods every now and then. You'll begin to write some of these down and learn to pace yourself and find out what works for you and what doesn't seem to help at this time.

Good luck finding a team of health care professionals who you can talk with. Ones that will let you bring in a stack of pages you printed off from the Internet and who actually listen to you as you work with them to develop a plan that is personalized to your unique needs. Know what you want and don't stop until you find something that works for you.

Good thoughts,

EM

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Hi UnicornIsis!

I used to get very shakey when I was at my worst with POTS. I had sudden onset as well and, like you, I have a connective tissue disorder that predisposes me to POTS. I can honestly say I don't think I had POTS all my life, even though I obviously had the connective tissue disorder.

There is a "Meet Others Program" that you can sign up for at the www.dinet.org site. It will put you in touch with others with dysautonomia in your area. The contact information is mass mailed and sometimes filtered as spam, so make sure you check your "junk mail" every once in awhile if you do sign up.

Welcome to the board!

Michelle

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Welcome to our little corner of the internet! Bummer of a birthday present though :)

On a good note, there's lots of good information out there for you. Sift through the main DINET site. These links have some of the info you've said you're looking for:

Symptoms:

http://www.dinet.org/symptoms.htm

mechanisms-how the symptoms are believed to occur:

http://www.dinet.org/what_are_the_mechanis...sms_of_POTS.htm

things that are believed to cause autonomic problems:

http://www.dinet.org/what_causes_pots.htm

and most importantly, what kinds of things can help:

http://www.dinet.org/what_helps.htm

when reading about what treatments are out there, you must understand that many of us have unique combinations of treatments to get the optimal effect.

Other places to get good quality info:

Free PDF download of the Dysautonmia Handbook

http://www.ndrf.org/NDRFHandbook.htm

Please feel free to email me if you want more! I've collected quite a number of links over the years :)

Nina

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unicornisis--

Glad you found the forum. I live in Ocean City, MD--not too far from you! I guess about a 4-5 hr drive.

When I was first diagnosed there was no way I would have been able to drive a car. I was too dizzy and weak. Like you, I was also very shaky. I think this is a common POTS symptom. A year later, with treatment, I am nearly fully functional. It will most likely be a long haul for you, as it is for most people, but you are very likely to improve.

I know how isolating it is--we all understand! Your friends and relatives go on with their lives, and yours has come to a standstill. Hopefully, you have a few people in your life who are caring and supportive while you go through this. And it is wonderful to have a forum like this to turn to, too.

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Welcome, I too have the tremors usually only on days that my POTS is at its worse. Actually, today was a good reminder of how bad they can be sometimes, but now with med's I can get them under control. POTS is something you have to learn what your triggers are, like with me today, I know it's related to the cold I've come down with. Normal people although sick don't have all the other 'side effects' that those with POTS do, my bp has been all over the charts, high heart rate and tremors today, so.... The forum is a good place to gather info and support, so welcome!!!! Feel free to email anytime you'd like :-)

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Thank you Dan. I know about where you are. I really apperciate you positng even though you're better and don't have some of the same stuff and your words of encouragement. I'm sincerely glad to here that you're doing better and sorry about the throat problems. My granddad had trouble swalloing and it turned out to be lung and throat cancer, but don't worry I'm sure your's is not. Thanks for the name of the doc at UVA. I'm about 1/2 and hour to an hour from there in Goochland.

Earth Mother.... Do I detect someone who once had or now has hermit crabs? :) I agree about the doctors. My PCP still won't let me drive. He finally gave in the last time and said when I'm symptom free we'll talk about it again. I think part of his doesn't want me driving because he's known me since I was really little and he doesn't want me getting in an accident or hurt, (like my brother did!! ARGH!!). I did think every now and then that maybe some of this was in my head or I was over-analyzing ?I guess? some of it, but I KNEW!!! most of it wasn't. As soon as I could tell the specialist didn't want to admit that he or she didn't know what was going on, I basically stopped looking at what they said as credible, but I did continue to listen to what they said in hopes that there would be a miracle and he/she all of a sudden know what was going on. But, no such luck until I hit Hopkins. Mom and I are going to try to see this guy in Manassas a peds cardio guy because I REALLY don't like Calkins at Hopkins, even though I LOVE Sally Snader up there.

Michelle, THANK YOU!! I joined after I read your post. Just found NDRF.org last Wednesday, here last Thursday, and DYNAkids.org last Friday!! So I hadn't even had time to look at all the parts of the sites yet. I hadn't seen that yet. I think one thing we need to tell our doctors is about all the support groups out there for this. That was one of the first 10 questions I asked at Hopkins. I was told there are none or that the person didn't know of any. I kept going, there can't be NO support groups out there for this. This is sooo WEIRD that somebody somewhere has got to have formed at least a discussion board just to rant about the weirdness of the symptoms and all. Finally TOTALLY by accident I found NDRF.org and then from there, here. As my mom says Things happen to us for a reason, we may not know what that reason is, but it's for a reason. And as my dad says Somewhere there is a family that nothing happens to.... and we make-up for them! :) Someone here is always getting hurt or normal sick or something happening. :)

Nina, THANKS for all the links!! I'd love more!! I'm going to e-mail you sometime this week, if I can remeber. Between bad spells of this and ADHD I have an almost permanent Brain-fog!! :)

MomtoGiuliana, you wrote: "I know how isolating it is--we all understand! Your friends and relatives go on with their lives, and yours has come to a standstill. Hopefully, you have a few people in your life who are caring and supportive while you go through this. And it is wonderful to have a forum like this to turn to, too." The my life at a stand-still is exactly what I was feeling and couldn't quite get into words. I talk to my friends every now and then and they're telling me what they're doing at college and I keep thinking I'm supposed to be stressing over term papers and reading 150 pages a night and complaining about Dining Hall food. It's even worse when they tell me I only have this much time left till graduation and I'm thinking I was supposed to be class of 2005 too. But at least I have 2 full years of college under my belt and I can find a way to finish online somewhere I hope. I have always been a loner and an introvert so that's helped me dealing with the isolation.

Genie, thanks for the offer to the e-mail and the good advice about being sick. I've only been sick a few times since this started for me. The rest of my family has REALLY STRONG immune systems, they almost NEVER get sick. Since I got non-EBV mono my immune system has been even weaker and I thought it was weak enough before. When I've been gotten sick since I've been sick with this, I just thought the cold or virus was really kicking my butt and my immune system must be weaker than what I thought. But what you said makes a lot of sense and I kept thinking that some of the tiredness, weakness, and other symptoms seemed like just too much for it to be just a virus or a cold. So I'm REALLY glad you told me about that.

Thanks to all of you for your support and encouragement!!

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Hi, I'm another Virginia person - I live in Northern Virginia. I was also diagnosed at Hopkins. The first year or two were rough for me, but it did get better. I am able to live a fairly normal life, returning to work and school. Hang in there :) If you want to talk, send me an e-mail.

Pam

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i'M SO SORRY TO HEAR THAT YOU ARE HAVING SUCH A HARD TIME..THE DR. THAT YOU ARE SPEAKING OF IN MANASSAS..IS THAT DR. ABDALLAH?

IF SO, FEEL AT EASE...I SEE HIM IN AN OFFICE IN HAGERSTOWN MD....OH...BY THE WAY I AM IN WEST VA. JUST 4 MILES FROM THE VA. STATE LINE...I HAVE A DR. IN BALTIMORE THAT IS IN CHARGE OF MY CARE, YET NEEDED SOMEONE CLOSER THAN HIM FOR THOSE DOWN TIMES...

I HAVE HAD VERY MILD SYMPTOMS FOR THE PAST FEW MOS. ONLY DUE TO THE FACT THAT I JUST HAD A BABY AND AM STILL SEEING THE BENEFITS OF THAT...CAN'T SAY WHEN OR IF IT WILL EVER COME BACK AS BAD AS IT WAS..I KNOW THAT I WILL DO WHATEVER I CAN TO STOP THAT FROM HAPPENING...HOWEVER I DON'T KNOW HOW OR WHY I HAVE POTS...IT CAME ON QUICK.....I WAS DOWN AND HAD NOT A DAY WITHOUT SYMPTOMS...THEN 3 MOS INTO IT I FOUND MYSELF TO BE PREGNANT...IT WENT WELL AFTER THE 5TH MONTH...BUT STILL HAD ALOT OF SYMPTOMS...NOTHING COMPARED TO BEFORE THE PREGNANCY THOUGH..FEEL FREE TO E-MAIL ME AT (CUZICANHAVE8@AOL.COM) IF THERE IS ANYTHING THAT I CAN TELL YOU ..

THAT MAY BE OF SOME HELP TO YOU THAT IS...THIS FORUM...I HAVE SPENT MOS. HERE JUST READING..I NEVER REALLY WROTE ANYTHING TILL A WEEK OR SO AGO..BUT THESE PEOPLE HERE ARE THE BEST SOURCE OF INFO...THEY HAVE BEEN OF SUCH GREAT HELP TO ME AND THEY DIDN'T EVEN KNOW IT...SO STAY CONNECTED AND YOU'LL STAY INFORMED BY SOME OF THE BEST...AT TIMES I BELIEVE THAT THEY AND I MYSELF HAVE MORE OF AN EDUCATION WHEN IT COMES TO POTS THAN MOST DR.S OUT THERE..GOOD LUCK TO YOU...THERE WILL BE BETTER DAYS...OH AND HAPPY BELATED 21ST...

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