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Hi..need Support Info..kind Words Some Wisdom


Guest Belinda

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Guest Belinda

Hi Potsy pals..I wish Ihad something posotiove to say but I feel like poop. On top of having the pothole problems(weakness etc). I STILL have these problems with my nose and throat throbbing and burning and occasional shortness of breath...and chest constriction. ENT and GI continue to tell me it has to be due to my autonomic problems..

Well to even further my despair I found out that Grubb's office cancelled my appt. for the 13th because I saw Bev last month so they considered that my Initial consult..CAN WE SAY I am a little ticked??

The secretary then called me back and fit me in for the 24th for a 1/2 hr.

I feel like my wind is being taken from me every couple of minutes..it is such a funny feeling in my throat.

SO thanks for listening to me vent but I have had this up to my eyeballs :ph34r: .

Any ideas on the nasal burning /throbbing and why I could feeel like the wind is being knocked out of me???

And wnything I might do to get me though it??

Besides cut off my nose or body from the lower neck up????

BEE :ph34r:

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Hi Belinda, It's nice that they think this is from your dysautonomia, but can they not give you something to help ease things off? Grr... Have you tried cold compresses or ice packs on your face for some temporary relief? Drinking ice cold water? I'm sure you've likely tried just about everything by now! Wish I could help. Laura

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Hi Belinda, wish I had some advice to offer you. Hang in there!

Jacquie

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Bee, sorry to hear of your disappointment, that must be tough. I'm glad they got you in later in the month.

Please continue to pursue all avenues for breathing relief, it can't all be Dysautonomia.

You're working hard to get better and it must be frustrating to not have better results. Keep trying. Einstein said, "I think and think for months and years. Ninety-nine times, the conclusion is false. The hundredth time I am right." We can't expect to have better results than Einstein. (Preachin' to myself, here.) Hang in there and keep up the fight.

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BEE!!! are you still feeling like a bowling ball head??

I'm sorry that you are still feeling like poo!!!!!!!!!!!!! I wish i had some words of wisdom for you.. and that i was here today to talk to you! call me anytime tomorrow I'll be home ok..(packing!)...I know how upset you are over your app. being cancelled and I would be too dear.. it doesnt make sense to me that they'd cancell your appointmet.. but hey... what of pots does make sense??

hang in there dear!! HUGE BEAR HUGS FOR YOU!!

would it helped it i mailed you apic of me looking goofy w/ stitch on my head??? hmmm huh huh would it??!! its pretty funny!!! i'll try and email it to you!!

hang in there dear.. Iknow you've seen diff. ent's pulmo guys is there anywhere else you can go in Ohio?? what about starting to apply to vandy and mayo.. just to get the ball moving on that front?? did you do that yet??

CALL ME K!!!

love and hugs

the incredible Jello blob SMURFY girl!! lol

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That's very frustrating indeed. I would suggest another ENT also. It could well be a combination of dysautonomia and allergies or sinus issues. This weather has done it for me and things have not yet bloomed and I have stuffy nose, dry throat, burning eyes, feel like I can't swallow and chest tightness. I think they are a combo of dys. and seasonal changes.

Hope you are doing better today. :)

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I don't know where in Ohio you live. We in Pa have a major problem with strep throat right now. Its been on news reguarly and the health dept is encouraging folks to get checked. The deal here is there are alot of "carriers" of which I was one. Its because folks tend to stay here not move soe .......

You might want a culture. The other thing for me that was a problem is sleep apnea, since I have my c-pap machine its BETTER. Good luck Miriam :)

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