Had My 3rd Tilt Table Test Today

[tinkerbella]

I had a third tilt table test today at in Boston. I must say this time all the staff were wonderful. Explained everything as we got ready for the test. that's the way I like it. I lasted only 2 mins up at 60 degrees when my heart rate was so high and I couldn't breathe. Soon there were Doctors and people all around me. I have been having a harder an harder time breathing these days when I get so tachy.

After about 15 mins I was chest pain free, nausa free and less tachy so we tried to stand on the floor and It was bad all over again. Back came the nicest doctor and he said you certainly have POTS but something else is going on with you. He said I would really like it if you could come back to this clinic as I think we could help you. You need more tests...

I then took my nausa meds and drank a gatorade as fast as I could. When they found out I was alone the doctor walked me to the lobey and talked for some time and said that I need to be seen soon and that it's a year to get an appointment. Due to what they saw he would rush me through, as I was a patient before but the staff at the time wasn't warm and fuzzy and the head doc had thown up his arms and didn't know what to do with me.

Now, I need to discuss this with my cardio, as maybe we do need a 3rd opinon right now. He also agreed with me about mast cell and checking that out. He seemed surprized that I even knew about that. I have forum lingo and I used it well...

I'm very blessed to have acess to wonderful health care. The doctors are so different, I need to go eenie meenie miney moe, where should I really go?

To someone who spends all her time with me or someone who the whole world comes to see? Can you jump around?

I'm so sick and tired of traveling with a pink wash basin in buses and cabs as I'm so sick all the time now.

[Mrs. Burschman]

I'm glad that you had a good experience. That's really great that they're working to help you so soon.

I hope they figure out what's wrong -- and can help make it better!

Amy

[tinkerbella]

Thanks Amy,

I really think this fellow Doc saw me as a nice interesting new guinea pig to learn, learn, learn with. My neuro speds a lot of time with me and I really like her. I was just at this other place to use their testing lab as my cardio likes their lab the best in town. But for now I got some sleeping to do and more appointments tomorrow and thursday. then hospital wed and friday for hydration for the day.

I did get really good news though, I got approved for help in my home. Now I just need to find someone to build a ramp or contract with someone or the order won't go in for the moterized wheelchair. It's a big one so It won't work with a portable ramp. I'll focus on that next week.

[potsgirl]

BellaMia,

Yay! I'm so glad that you got approved for the home health help. Didn't you post earlier that your son might be able to help you build the wheelchair ramp? If you do need to contract it out, it should be a relatively simple job for someone to do. Way to go. You are so deserving of the extra help, I'm smiling as I write this!

Cheers,

Jana

[tinkerbella]

Thanks jana,

I was trying to see the local tech high school where I taught nights might be able to do the job as funds are low and this year they aren't building a house. I haven't heard back yet. I gave my name and # out this morning to the cab driver who has friends who do that kind of work also. So, I need to get the ball rolling as one guy told me it would be 1200 dollars easy yesterday. gulp.... I only have 2 stairs... it's a heavy chair.

Everything has it's way of working out... I'm just tired, but smiling too sweetheart!

[janiedelite]

You asked if you could "jump around" to different docs. The I saw over a dozen docs in 2008 in order to try to get answers for my crazy symptoms. Some were helpful, some were not. Like you, I have a great primary doc (sounds like yours is your cardiologist) and I want to involve her in all these decisions as she's commited herself to helping me. If your insurance allows you to go to several docs, and your primary doctor is willing to work with them, then I say go for it! The only thing you'll lose is time if they don't have answers for you, but you might gain better function!

It always feels great to have a physician validate your symptoms. Sounds like you've found someone who really wants to help you. As long as the insurance pays, and your primary doc is agreeable, I'd see him again asap!

[tinkerbella]

Thankful,

thanks for your reply, I have three GREAT doctors A PC, Cardio, and a POTS neuro and I saw this doctor once before. Now they think I'm interesting now when my cardio told me he thought they would want to write a medical journal on me when he 1st sent me there. (well if they read my chart last time they would have know that) Down part there is you only see the real doc for 5 mins. It's like playing telephone tag...to get answers.

Now I can't get that song, "Jump Around," out of my head.

I'll ask my cardio as he's really the one I go by... I just wonder what other have done also.

Thanks.

Bellamia~

[Maxine]

Yay! It makes all the difference when the staff is NICE, especially if the doc is too-------BONUS!

It looks like they want to stay on track with you and follow up with you and actually find some answers and possibly bring you to a more functional state.

You have to keep trying, and even if you feel no one will ever help, something eventually comes around the corner.

It would be really cool if they did write a journal with you as the subject.

Maxine :0)

[chipper]

Bella,

You are such a delightful person. It is great to know you where treated so good. I hope and pray that they can make your suffering go away.

Love, Mary

[tinkerbella]

Bella,

You are such a delightful person. It is great to know you where treated so good. I hope and pray that they can make your suffering go away.

Love, Mary

MaryMalta,

You always make my day as you are a delightful person also!!!

Thanks for your kind words I hope and pray all our sufferings

go away.

I know there is a reason we are all here and a reason we have

all been touching each others lives. Without Pots all of us would

have never met.

I try to pull all of the good things of of all of this and remember

that I'm not alone with sweet people like you Mary. Thanks again

for your continued support.

xxx's

Bellamia~

[bren22]

Bella,

You are such a delightful person. It is great to know you where treated so good. I hope and pray that they can make your suffering go away.

Love, Mary

MaryMalta,

You always make my day as you are a delightful person also!!!

Thanks for your kind words I hope and pray all our sufferings

go away.

I know there is a reason we are all here and a reason we have

all been touching each others lives. Without Pots all of us would

have never met.

I try to pull all of the good things of of all of this and remember

that I'm not alone with sweet people like you Mary. Thanks again

for your continued support.

xxx's

Bellamia~

Can I ask the name of the doctor? I live in Canada and have seen many specialists but no one knows what to do with me. I am currently trying to get my medical coverage to pay for a trip to Boston for assessment and treatment. This clinic/doctor should the most promising I have heard about in a long time.

Good luck to you.

Bren