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BEE

Checking In..vanderbilt,university,and Cleveland Clinic

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Well..first of all I havent been on in a while..mostly cause I ..like someone else had posted am trying to not focus so much on my illness in hopes that it makes me feel better. Not really the case. I have been a member here and kinda quiet that last few months. So hello to all you newbies..

I have been dealing with SEVERE fatigue since about late aug. and have not recovered from it. Kinda feels like I could collapse any moment and even laying in bed and after a nap I am fatigued. Arms and body just feel like the electrical impluses arent getting to them even though i can move them.ANd my head constantly feels full. when i first got pots i was able to live a halfway normal life..could at least do things some days.

I have some drs. opinions on what is going on...nothing concrete. From CFS to Mitochondrial disease. I have withdrawn from all meds none seem to help. Even IV's really don't do much. ALl regular bloodowrk comes back normal and all EMG's imagine that?

I am being seen at the Cleveland clinic with a well known cardio. and the following day will be seeing a mitochondrial specialist there. So keep me in your thoughts. As I have 2 children that need their mommy to get some answers. I have been doing this on my own. And it has become very trying and I'm trying to keep my spirits up. Just very hard at this time..and I really cannot go somewhere to talk to any one about it. I am participating in a prgram at university hospitals in cleveland also..they have just started in their autonomic division.

I have also been contacted by vanderbilt to participate in a few studies they have going on..I know they won't have the magic bullet but maybe it can be narrowed down. and what may help.

Nice to meet all you new people~and miss all of the ones I haven't chatted with in a while.

~Belinda

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Bee

I know like many of us, you have been struggling for some time but you can't even get answers to some VERY mysterious issues. I hope you can get into any and ALL studies/clinics to try and pinpoint *** is going on.

Thinking of you and stay warm if you are getting hit with snow. getting about a foot here before it's all said and done...windy, too.

Keep us updated as you see fit.

Soph

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Hi Belinda,

Thanks for giving an update. I hope that you'll be able to get some answers in these next few weeks and months as you see the new doctors and have more tests.

I was recently at the Cleveland Clinic to see a mito specialist. We're probably seeing the same one. He was great - very kind, knowledgeable, and thorough. I think you'll like him. It's amazing the tests that he can run. There aren't always treatments, but at least you might be able to get some answers. If you ever need to talk as you go down this mito road, feel free to send me a pm.

Take care,

Rachel

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bee get out of my head girl :):wub::wub::wub:B) sounds very familiar hun... just know im praying for you and hoping that "they" get to the bottom of things for you sooner rather then later...always here for you!

love and hugs

dizz

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Bee, flower---pink.jpg

I hope you get some answers from Cleveland Clinic. You have gone on way too long NOT getting answers.

So far your treatments have been rather passive on the Docs parts, and they don't seem to have the fire under their you know whats to help you.

Keep pushing for answers Bee, you just have to.............

Keeping you in my thoughts and prayers as always---------- :)

Maxine :0)

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Sweet pea, good luck with the appt, you have been having it way too rough for way too long. Will pray you get some answers! mamahencluckcluck

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Bee I only wish and hope the best for you and your family. I have my issues but I'm scared to death to lose my energy. It would be near impossible to raise the kids. Are your parents helping you at all? I hope Cleveland Clinic has some answers that you truly diserve. You are a good person and I hope can bring that vibriant spirit back to your life.

Call me..................I'm here for you!!!! No one understands unless they are facing trials of their own.

I MISS SEEING YOU AROUND HERE!!!!

Dayna

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Hi Belinda!

It was soo great to see a post from you up here on the forum. I was just thinking about you the other day as well as a few other oldies who havent been posting lately. I hope you get some concrete answers from your visits...I can't imagine raising 2 children while dealing with everything you have going on...I wish you the best of luck on your journey, please keep us updated as much as you can, also feel free to PM me!

Jacquie

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