Monstrosity

Interesting what Monstrosity said about neurontin. I haven't taken it myself - but have three different family members who took it for various reasons (brother with MS, mother with fibromyalgia, sister in law - not sure why she took it!) and they all said it affected their moods/emotions in negative ways.

its too bad because otherwise the drug was helpful.

I dont go into denial but I have an issue with acceptance....

Great article which seems pretty medically accurate. Glad to see POTS in a major paper. Interesting that the patient is male. I thought the all in your head thing was more for women/girls.

I'm sure its tough being a woman and being told its all in your head. At the same time try being a man and being told that. Your looked at to be strong physically, mentally, etc and your not sure whats going on with your body. Everyone is looking at you saying "but you look fine"... grrrrrrrrrrr......... Now if I even think someone I know (family or friend) is questioning it I'm quick to tell them to **** off.

I want to see the Avengers with my boys, but I am afraid that the action scenes will really bother me. Rapid sequences act like a strobe light and trigger awful symptoms; were there any scenes that were like that?

some were fast like that. This sometimes bothers me and sometimes dosent. I was ok all in all during the film.

I wish I had a dollar for every time someone said "its all in your head"...

I did use Neurontin for a bit but after a few weeks it made me mean as ****. I also use the Alpha Lipoic Acid.

I saw the movie last Friday and enjoyed it! I read a lot of comic books when I was younger and when this movie came out I was very excited. Needless to say I remember when one of the Hulk movies came out a few years back. It was prior to POTS and a girl I was talking to compared me to the Hulk. She said I was normally friendly, calm, etc. However if something set me off I was like the Hulk, lol. Anyways the Hulk was my favorite character, growls, screams, breaks everything he can! The movie had action, humor, drama, etc! In the end it was good vs evil. I think thats why I like superhero movies, they represent good vs evil and good always wins.

Jobst athletic ones are what I use

male 6'1 190ish currently, always had a fairly thin build.

I'm not a huge reader but when I was first diagnosed my better half was in a book club. At the time she was reading "The Art of Racing In the Rain". I couldnt put it down and finished it within a day or so. The book is written through the perspective of a dog. It had everything you could want in a book. I highly recommend it!

http://www.garthstein.com/arr/

Arizona Girl your last sentence states it best "Not all neuro's are equal, there are many different subspecialties in neuro field of study." This is so true and I hate to say it my Neuro who specializes in "Autonomic Dysfunction" has yet to impress me...

try this: http://en.wikipedia.org/wiki/Ehlers%E2%80%93Danlos_syndrome

Since this all got bad I noticed I can tell when a floor is the slightest bit off. I've been house shopping over the last few months and everything I've liked has had issues where the floor/foundation has been off. I've had my agent and Fiance argue with me. One house we looked at and then went back for a second showing. I pulled out a marble and brought a level. I was dead on that the floor was off. I can tell my agent is growing irritated with this, lol I dont care its the only real plus to living with an autonomic dysfunction. Just seeing if anyone else has this?

Myoclonus (however you spell it) jerks usually are first for me. I'm always tired and it varies if I have a headache or not. Oh and I need to pee in the worst way!

Lipoic Acid is supposed to help with neuropathy. I'm guessing you've been tested for being a diabetic?

We see Dr Kinsella in St Louis at St Clare Hospital. He used to work at Case Western University Hospital in Cleveland.

At one of our appointments he actually called Dr Chelimsky on speaker phone and they bounced ideas off each other with us sitting right there.

Christy

ah... gotcha thanks!

We saw him and his wife 5 times while they were in Cleveland. Our wait in Cleveland wasn't as long so his name must be getting out there. He and his wife were wonderful, but we found a local specialist who used to work with the Chelimsky's so we stopped traveling the 9.5 hour drive. He is very knowledgeable and there are many papers and studies done by him and his wife. He diagnosed my son with POTS and small fiber neuropathy, and we just recently got the missing piece to the puzzle, the MCAS diagnosis.

If you can see him, I would recommend it. I don't think he just works with POTS, he was head of the Autonomic Clinic in Cleveland at Case Western.

Christy

Christy who do you see that used to work with him?

I've heard nothing but good things about him. I wanted to see him when he was in Cleveland but he moved before I could.

so when i go for this MRI do you think its sensible to have someone there after just incase? We can never tell what we are going to react with horrible condition, things most normal people who go for an MRI dont have to even worry about.

A month or so I had to drink barium and have x rays done. I wish I would have had someone to drive me home. Some test, dr's apt, etc its best to have someone with you "just in case".

I met someone that had all the POTS like symptoms, turns out she had Chiari.

Has anyone rulled this out or have this?

http://en.wikipedia.org/wiki/Arnold%E2%80%93Chiari_malformation

http://www.wichiaricenter.org/oth/Page.asp?PageID=OTH000005

anyone can join my facebook from here, Montie Hardman. Just send me a message your from dinet

The vet that I take my Bearded Dragons to has a deer that lives in her house! I know Melanie and her husband Steve both great people. You can check out the deers website and you can see a live webcam as well!

Website:

http://www.dilliedeer.com/

Live Webcam:

http://www.ww.com/dilliecam

Bellamia, I like that idea. It seems really reasonably priced too.

Monitie, let us know of the quality and which ones you ordered. What did you put on them?

Issie

It was about $30.00 out the door for 2 bracelets. Not telling what I put on them... you will have to wait for the pic!

I also like for 15 cent more each bracelet it would be made in the USA ~ I'm for more PRODUCTS MADE IN THE USA ~

I used that option and I used the recycled option.

I've only herd good things about both of them. I wanted to see him at UH. However after I had made an apt I show up and it wasnt the doc I thought I was seeing... I was not very happy and thats only one reason I wont go back to UH.