mom4cem

Lauren,

I wish I could offer you some great advice, but I have nothing better than what has already been said.

I'm sorry that this is happening to you and wish I lived close by to help you out. Keep the faith and I'm sure something for the positive will happen real soon.

Hi Stace,

Glad to hear it went so well. It really gives us all hope the more positive dr. experiences we hear.

I just finished reading an article on the online news about how it has hit some Hotels. What was primarly a ship virus has moved ashore. I know it hit in D.C. at a hotel and I think Wisconsin(right after Christmas after xmas parties at that particular hotel).

Yikes..wash hands and don't touch your nose or mouth if you can avoid it. (That should scare enough people to keep their hands out of their noses! lol )

HI,

Sorry to hear about your daughter being so ill. Think checking the listings on here and dynakids especially is a great way to start. I do know there is a Dr. Julian Stewart, (you can google or yahoo the name and get a connection to the website) treats pediatrics/adolscents and I think he might see some in their 20's. Up in Valhalla, NY, upper part of Westchester as I believe. Dr. Stewart I've heard is very good.

Good luck.

Keeping you and your family in my thoughts and prayers. I hope they can give you all some answers soon.

I like the above post, buy it and cut it. To find something long enough to put several things on, plus lightweight and low might be a bit tough. So don't rule out something with long legs,,,have a hand hubby or friend or dad or mom who can cut it...do it.

Come to think of it, what about a kids table? My kids had a square, plastic table that had come with two kids chairs that they used for years and years. It is now outside. I think it is a safety first product. Only problem is the legs don't fold so if you have somewhere you can put it to the side, that might work.

Forget about the safety 1st. It was little tikes. Hope this link helps,,maybe get some ideas. http://www.littletikes.com/toys/toys-list....p;NumRecords=68

Melissa,

So glad to hear things are heading in a positive direction. You are one strong lady!!!! We are all here pulling for you.

Did you try the mvp/autonomic disorders center of alabama website? www.mvprolapse.com They have a listing of support groups, perhaps if they are not close to you they might know of one that is not listed. Though most probably have the marker of MVP.(I do) the symptoms are from dysautonomia so don't get turned off by it being a mvp group

Try not to beat yourself up. You can only do what you can. You did not ask to have this go on in your body. Yes it is hard for an adult to understand this let alone a child. Especially when they rely on us so much, and it makes us feel bad to rely on them. Do they really know what is going on with you? Perhaps if they read something about it, they would understand a bit better. Plus you being out in the working world and all and now being bedridden, I'm sure they just don't understand how that could happen to someone.

Teenage years are tough. Mine have not yet reached that age, but my oldest being 11 is already starting with the attitude, the expectations etc. So mix in a mom who can't be at their beck and call they feel cheated and we feel bad. As you said you overdid it and now you are paying for it. Maybe if they understood that things like that can be done once in a while but when you feel like you are up to it. It may not be next week or next month but is not totally out of the realm of possibilities.

I wish I could give some great words of advice, but I don't have any. Please let us know how it goes.

I'm sorry you came away feeling disappointed. Even at acclaimed places does not mean the dr's are compassionate and unfortunately as you pointed out, don't see outside the box. I've been to a few dr's who when I said about having mitral valve prolapse syndrome/dysautonmia, as well as fibromyalgia, they said, "well, you know that is just a fad diagnosis", "wastebasket diagnosis". When I notice that a doc is heading down that road, I now say it for them, they look at me, and say, that's right,,I'm like, yeah, heard it all before.

I don't know how you got to vandy, thru your own doc or on your own but perhaps back at your own, reg. doc you can get to see Dr. Grubb. I've not seen him personally, but from what everyone else says, he knows his stuff, is compassionate and his staff also.

TeaRose,

I just wanted to you to know I wish you the best on your trip. You have every right to expect that they will listen and address all your concerns. To treat you as a whole person. To give you the benefit of whatever knowledge they have and to make you feel like you are getting the best.

I hope you get a great team of doctors and a new game plan. Who knows the great wizard may have something special in store, just waiting for you.

There have been so many out with this stomach virus, knocked out for a few days. May be worth seeing the doc if you can just to make sure since there are other things going that most people don't have but we do.

Hope you get to feeling better soon.

Sorry you are feeling so badly. I have fibro also, comes in flares but definately gets more intense with the cold weather and with stress. I don't take any meds for it though outside of tylenol or advil, I can't tolerate the harder meds.

Try some warm baths with epsom salts? Hope you find some relief soon.

Hi Sandy,

Welcome aboard.

How long have you been on the Toprol? I also live in Nassau County. PM me if you like. I have palpitations, tachycardia, rushes, hr up to 130 or more sometimes plus a whole load of other symptoms like most.

I have yet to find a Dr. here who really specializes in it but I do know of one member who had a doc that they liked, but I have not looked into him yet.

Melissa,

Please know I am thinking of you. I want to hear that the fish is swimming around the bowl!!!

Keep fighting, you will win!!!

Very interesting. Where do you see the second p wave on the 2nd ekg? Right after the qrs, the little bump? Would only be considered an a-tach if it is a consistent extra p-wave, meaning could not movement during an ekg etc, change the pattern? What if you see a "bump" in one wave but the rest are fine, considered artifact?

I'm interested(if you can't tell) on reading ekgs.

Merry Christmas and a Happy and Healthy New Year to all of you and your families!

From the Big Apple, New York

On my 11th visit to a Dr., this Dr. said to me, "here is a name of a good head shrinker, cause there is nothing physically wrong with thee",

nothing but the

10 ER visits with tachy

9 skipped beats

8 nighttime trips to the bathroom

and

8 holistic remedy supplements

7 hours of delayed digestion

6 hours of bladder retention

5 dizzy gold stars

4 times normal heart rate

3 brain lesions

2 thyroid lumps

1 nothin' wrong with theeeeeeeee

So nice to hear that there are good, compassionate docs still out there. Glad you have one of them

I've had problems with my hands/feet ever since I was small, and I have not been diagnosed specifically with POTS, but Dysautonomia and MVP.

I was told when I was a teenager that I had reynaurds afte seeing a rheumatologist. It can be very painful in the winter for me, layers of gloves don't help. I take a beta blocker but don't know if it has made it worse or not.

I have had a lump under my chin that comes and goes since I was a teenager. A dermatologist years ago told me it is a fatty lump and can get bigger and smaller, and it has and does. You can't see it, but if I look up and stretch my neck out I can feel it with my fingers.

Possibly it could be just fatty tissue.

BTW, I had a lump on the side of my neck a few years back, I went to see a Head and Neck surgeon. That might be an option for you. That is what they do.

I'd like to see them worm out of that one!

It could be any type of arrhythmia, from a string of pvcs to pac's. The best way is to get it documented. To bad you did not have the event monitor already. I've worn one, sometimes for months a time to catch those events that don't happen daily. It really can help to put your mind at ease once you know what it is.

Sometimes if my heartrate is slow to begin with (which is rare for me) taking a beta blocker that lowers it even more will cause me to have more arrhythmias.

The urge to cough is very common. I get that also. If you are still having this, you really should go in either to the e.r. or to your dr. and get on an ekg so they can see it.

Hope you have been drinking plenty of fluids, I was told drinking a lot of water at the time can help break the cycle.

Hope you are feeling better now.

Hi Lavander,

Welcome. Sorry to hear you have been dealing with this alone for so many years. There are so many varying symptoms from one person to the next with dysautonomia that nothing seems to far fetched. It certainly sounds like it is autonomic related. The autonomic system affects so many things within our bodies, gut, heart, b/p etc.

My b/p does not always go down, many times it is normal or goes up quite a bit too when I stand. My heartrate always goes up quite a bit, not so bad anymore while on a beta blocker but first thing in the a.m. b/4 I take a pill, when I stand it pounds away,,probably at 120-130. Sitting I can vary from low to above normal.

What have the Dr's been telling you? Are you taking anything at all?

I'm glad you found this site. Armed with knowledge you can now hunt down a dr. who, if he does not really understand autonomic problems, is at least willing to learn while helping you.

Welcome again.

Possibly the adrenaline that kicks in from exercising and the build up of lactic acid just does not get re-absorbed or whatever it is supposed to do and just lingers and keeps us wired but tired but not enough to have a good nights sleep.

When I do exercise I try to do it in the a.m. or early p.m. Try to avoid the evenings since it tends to just "wake everything up" and keep me up