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Seeing my new doctor


corina
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Yesterday I had an appointment with my new doctor, and you know what? She is fulltime working in the dysautonomia field. She works together with another doctor (who's also fulltime working on dysautonomia). She sometimes works together with my last neuro, who told me he couldn't help me any further. We had a very good conversation in which I told her everything what's going wrong with me. Ofcourse I wrote it down on a paper, you know me, I forget almost everything :) . My familydoc also wrote about 4 pages and we went through it all. She agreed on doing more tests on me and I will start on june first. We agreed on talking about the rehabilitationprogramme when all the testing is done. I was very excited about this appointment but I also wanted to protect myself for (or from?) another disappointment. I don't expect to walk on the beach next summer (that's one of my favourites!!!) but I want to be sure about POTS (instead of MSA or PAF) and I want to become as good as I can become (hope you know what I mean). So I have a very good feeling about it and guess what: I don't need to have another TTT, boy that made me glad!!!! I'm glad my familydoc got me this doctor, doing more tests might give me some progress.

Thanks for listening, I really am glad I have you all to talk about this, knowing that you understand me (as you experience this POTStrouble yourselves).

Corina

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That's very encouraging news. Sometimes you get the crappiest doctors than it seems like God send us our hope. Where are you located? I need some good doctors. My neurologist seems okay. I have my second appointment Aug 25 but my family doctor never heard of autonomic neuropathy, POTS or gastroparesis, dysautomia. That just seems weird that a doctor hasn't heard of any of my conditions. So how can they help than?

Congradulations it sounds like your on the right track.

Dayna

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Dayna, Corina lives in the Netherlands-- too far for you to travel for doctor, yes? ;)

Corina, I'm so pleased to hear that your appointment went well. She sounds promising! I can understand why you don't want to become too hopeful though--I've felt that way almost every time I go to a new doctor. However, for you, it sounds like this doctor really does know what to do for you. :) I hope that she comes through for you.

Nina

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Guest Julia59

Corina,

Talk about memory................

I put your appointment on my calander so I wouldn't forget to pray for you yesterday. My memory lately is pretty bad---and now i'm forgetting how to spell easy words, so bear with me on my spelling everyone. ;)

Good luck with all your future testing. I hope it will be helpful in improving the quality of your life. If they can find more answers, they can find better treatment.

Tkae care,

Julie :0)

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June 1 ... that's an easy date for us to remember! Corina, I'm so happy that you've found a specialist you can work with and who will work with you ... I hope your spirits remain high and that your symptoms aren't giving you too much trouble during this waiting period. (By the way, I've also been really pleased to see that you've had the energy to post a little bit and to keep up with Ernie as she goes through her tests. This is a good sign! ;) )

All the best,

merrill

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Guest tearose

Wow, a doctor that spends all there time on dysautonomia! That is a good find. I hope you get all your questions answered. I want them to come up with a special treatment plan for you so you will improve !!!

I am so excited for you! You have a great attitude and I think you are going to be in good hands. If anyone can help you, it seems this is the place!

Okay, maybe not the beach this summer, but someday in the not so distant future!

Keep us posted till you go. tearose

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Corina, it is so good to hear when one of us finds a really good doctor and I hope that this specialist will be able to find a course of treatment that might move your progress along.

I fully understand about not getting our hopes too high. I made that mistake before going to the Mayo Clinic and it was hard to get past the disappointment but you are very realistic. I also think that having a specialist in dysautonomia take an interest in your case is a positve sign so we will mark the community calendar for June 1.

I too notice that you are sounding stronger these days and what a compassionate thing to do reaching out to Ernie. You are a good person to know!!

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okay, julie you rock for writing that on your calendar to remember! very, very kind and thoughtful!!! no worries, i have to write everything down too!

now...to you corina!!!

HIP HIP HOORAY!!!

i am so grateful that you finally have someone who seems to be approaching this in a thoughtful and careful and helpful way.

i hope you will be able to find some more answers...

i am glad you don't have to get a TTT again either! can i just say, that test was a nightmare???? i was sick for days afterwards puking and potsy and all this junk. too bad i had no idea then why that was happening!

anyway, i hear you on not getting your hopes up too much...

i call it being 'cautiously optimistic'!! that's my approach. but it is hard for me to not get dreaming of big things right away...like walking on the beach!

just knowing you have good medical care lifts a huge weight doesn't it??? it's helpful to know someone's paying attention!

thank you so much for posting. and i second merrill's words...i love seeing your posts more frequently (althouhg, i seem to be fading these days, huh?) and so grateful that you could call ernie. i love that!!! it warms my heart to know we're all watching out for each other!

okay, i'm being a big mush and i need to 'hit the hay!'

hmmm....what other silly american saying can i stump you with now??? you are learning all of my sayings!

i'll work on something!

emily

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Corina,

You are so lucky to have found a dysautonomia specialist. A rehab program sounds like a good idea, if nothing else is working. Good luck with your testing and treatment, and keep us all posted.

Amy

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Thanks you guys, for all your sweet replies.

I'm sorry that I can't send you my doctor Dayna, and all others who need a good and caring doctor! I was almost in tears when I read all your replies. I do need to improve a bit, because at this point I have to be carefull not to catch a cold or anything because that might be dangerous.

Oh and Emily, I'm not sure what you meant with the mush and I also forgot on "hitting the hay". So you see Julia this forgetting things, is just part of us ;) . And although it bothers me very much, it isn't lifethreatening so I don't want to worry about it. Thank you so much for putting me on your calendar.

Oh and you know what: the new doctor told me there is a Belgian website on dysautonomia and she wanted to give me the name of it (which she and I forgot later on) but I thought: who needs the Belgian website: I've got all of you!!!! I also talked to her about the DINET website and showed her my bracelet. She took the time to look at it and read it. She was impressed by it and loved the Hillel quote.

As for the beach: we planned our vacation for this summer and decided to travel to the south of France, near the beach. And my husband told me not to worry: he will carry me on the beach. So you see: even with all this POTStrouble, life CAN be beautiful. Thank you all (I can't say it enough) you are the best friends in the world!!!

Corina

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Hi Corina,

Congradulation on finding a new specialist. I am glad that you don't have to do another TTT since it makes you so sick.

I understand why you don't want to have your hopes too high. I have decided from my own experience that from now on aI won't expect much from doctors and if by miracle they have some kind of answer, well I'll be happy.

We just have to take one aay at a time and see what doctors can offer us. Never give up your search!

Thanks for calling me at the hospital and for posting on my behalf. You have made my stay easier to deal with.

Take care

Ernie

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