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Please keep Dan in your thoughts and prayers


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Dan went to the ER today after having another throat closing episode. This has been one of his most debilitating symptoms. Please keep him in your thoughts and prayers.

Dan's medical journal is at: http://eye-q.com/POTS/LogInForm.asp

Michelle

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Dan, owner of a bag of brains, this is the other bag of brains talking: get better soon. Big hugs to you.

Nina

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Thanks all :).

I really needed your thoughts today! I should know better than to go to the hospital on Friday the 13th!!! I had a very bad throat closing episode last night. My wife said I was starting to turn blue! We called the neurologist on call, and heard from him early this morning. He said we needed to come to the ER ASAP and that they would perform a CT scan and X-ray of my neck and take it from there. Here's what I wrote in my journal:

Arrived at the ER at 10am as per Dr. Voda. Sat in the waiting room full of TB patients for three and a half hours. Finally had the honor of being looked over by a medical student. It seems that none of the CT scans or X-rays that I was supposed to have were set up. Sat on a gurney in the hallway for an hour. By 2pm I was finally able to visit my ENT. Of course the nurse walked in with a laryngoscope (I have had 12, including one last week). I told her to back off!

Dr. DiNardo does NOT want me to have a tracheostomy. He is CONVINCED that the worst thing that will happen to me is that I will stop breathing and pass out. Sounds like a LOT more fun than a trach! He also believes (even though this problem has been going on for 4 years) that it is a transient problem. In the mean time, I should just see a speech therapist to learn some 'coping' techniques that will help 'instantly' stop my throat spasms. That will be scheduled for sometime in October I'm sure. Not too happy with the way the day went. I am REALLY hoping to hear from NIH in the VERY near future (regarding 2 Dysphagia Clinical Studies). Oh yeah, to top it off, my Levsin prescription won't be available until Monday.

More to come! Anyway, thanks again for all your hugs, positive thoughts, and prayers. They must have worked. I'm still here!

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We need to have the Guinea Pig awards for the week ....

For those who are the perfect definition of PATIENT. We try everything, we wait and watch and wonder if any of this will lead to the help we are seeking. We laugh, we cry and we reach out to each other for a gentle embrace at the end of a long day.

Congratulations Dan. On our first recipient of this noble honor.

Good thoughts,

EM

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Dan

I always look forward to your replies to my posts. Although, I'm not anywhere near as knowledgeable as you are on this subject, I do have tons of good vibes to send your way, so I'll keep thinking positive thoughts for you on my end.

Bren

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Dan,

First I agree!! You get the Guenia(sp?) Pig Award for this week. That's amazing/aweful, but knowing the hospitals in Richmond, believable. I usually go to St. Mary's of Henrico Doctors (original campus) if I have to go the ER. If it's something weird and unusual I'll go to MCV, but if it's a routine, normal emergency, I refuse to go anywhere near MCV!! I had a migraine one night and was seeing Delorenzo at MCV at time while they were still trying to diagnose me. He said the next time it happened come to MCV and page him and get him there immediatley. So I do what he says, like an idiot, and go. I spent 3 1/2 hours in the waiting room and that was only because dad finally got tired of it too and walked up to the desk and showed his badgeS plural and the nurse freaked. After 4 hours in the back of my screaming and crying the nurses just looking up from their desk and looking back down and not having my parents back there because I'm 21 the doc finally came to see me. Anyway, another 2 hours after that they finally gave me the pain meds and anti-neausa meds. But the guy on-call from Delorenzo's office didn't show up until after the migraine was gone. They never listen to anything you tell them, even if you show them a letter from your doctor saying this is what you have, this is the meds you can't take or you'll die, these are the meds you can take, etc. The still don't pay any attention. I hope you didn't go to MCV, although with not being sure what's going on with your's you might want, but be prepared for a LOOOOOOOOOOOONG wait and them not listening to you.

Okay, just realized I was ranting about my own story! SORRY! :(:o:huh: I'm glad you're doing better now and I'm sorry to hear about that horrible experience. You're in my thoughts!!

MP

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Ooh Dan. That just stinks. I hope you get some ideas from NIH.

I think we all have our own ER horror stories--I've had a few doozies. I always have to weight out if I feel bad enough to run the risk of having them make matters worse (been there, done that, don't want to go back).

Dan, I hope the spasms back off. Nina :huh:

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Guest tearose

Glad to hear you are home! What a lousy experience! In a stream of them, right? Now, as I am a really good game player NOT of toad games but of playing the "glad game"...I want you to be glad that EarthMother and others have now bestowed upon you the first Guinea Pig Patient Award. I discovered the perfect image of that at guineapig.com go check it out. All we have to do is add the wheelchair and the image seems to fit, right? Anyway, from all your posts, I don't quite feel right to stop praying for your medical team!!! You just hang in there and keep knowing we are right behind you. Oh, PS: please let MightyMouse get to level 10!!! It sounds like it is really important to her! Best regards...tearose

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Do keep us updated on how you are doing. Yeah, I like the idea of the Guinea Pig Award - that's a great idea!! I think we all probably deserve it. My local doc always says you never want to have a rare condition cause everyone wants to experiment, the story of my life :huh: Hope you are doing better!!

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Dan,

Just wanted to let you know that (although a little belated) you are in my thoughts, and I hope that someday soon you will find answers. I can't imagine how frustrating and scary these throat closing episodes have been for you!! Hang in there :huh: When are these docs going to step up to the plate with this stuff? If I were a doctor I would make it my personal goal to actually HELP my patients- or at least give it 100% to try. Maybe we should all go to med school...

Anyhow, keep us posted!!

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Thank you so much for all your good thoughts. I am hanging in there and know I will find an answer soon. I am going to try another new med this week (Thanks again, Nina), and have some more 'throat specialist' appointments set up. I am also in line for a Clinical Study and possible Clinical Trial at NIH. I will keep you posted!

Dan :huh:

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You are welcome Dan--I hope that it really helps you. I've been gut-spasm-girl for several weeks, last night was ghastly. Thank goodness for my meds or I'd have gone to the ER too. Keep hanging in there dude!

Nina

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Hi Dan,

just read the latest threads, I've been away for a couple of days so haven't checked the boards for a little while, and only just had the chance to read through all of your story.

I have also just discovered about the guinea pig award, and feel terrible for writing that i felt like a guinea pig this morning - this is a long term joke between my family and I.

I truly see you as the ultimate in Guinea Pigs - maybe you could take the Golden Guinea Pig award! If you should take Tearose up on her offer and need a picture of a guinea pig, i have a rather tubby one at home, who woudl be the perfect model.

You seem to have amasing strength and determination, I certainly feel I can learn a great deal from you.

I would also love to know more about this toad games business ????

Sorry for the rambling on, i'm in my fuzzy head stage of the day :)

I wish you lots of hugs and positive thoughts

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Michelle-

Thanks!

Nina-

You are scaring me again! I REALLY hope you can get control of your GI problems. They can be the WORST!!! You know I am thinking about you, with all the brains in my bag! I've got my toad on a Harley to remind me of you as well. Feel better!

Louby-

Thank you so much for your thoughts. I think everyone here deserves a Guinea Pig award! When was the last time your doctor tried something on you and said "I'm SURE this will solve your problem" before proceeding?

As for ToadGames.com, I built this website with a friend since I became homebound. It's a totally free site. Even the 'sponsors' don't pay for their ad banners. We have thousands of members and average 22,000 games played per day with millions of visitors each month. SO hopefully we can keep it growing and turn it into some $$$ someday and help out DINET! Who knows...

I wish everyone improved health!

-Dan :D

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