Breathing difficulties


Posted by Nancy MacDonald , Dec 27,2001,12:06   Archive
Hi I am having a lot of problems with my breathing when my eyes are closed and I am trying to walk around. Anyone else having this problem. My Doctor wants me to go to a Pullmanary Specialist, but it is such a chore going to any doctor when you are like this.If any one read my posting a couple of months ago after my surgery I am sorry to say my good results did not last. Had Botox 8 days ago and am hoping for a result. Hoping that maybe it will work now that I have had surgery. Have never had a response from Botox. I can't seem to get a handle on this. I appreciate your good thoughts.



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Re: Breathing difficulties

Re : Breathing difficulties --- Nancy MacDonald
Posted by June in Toronto (June Floyd,June in Toronto), Dec 27,2001,15:06 Top of Thread Archive
Hi Nancy, sorry you are having these problems with your breathing - I know others on the board have had the same thing and have talked about it in back posts (you could do a search or wait for them to post to you). I hope your last botox injections will work for you (mine take up to 6 weeks before they do-but last longer than most) You must be very distressed with surgery and not having good results, no response to botox and now this breathing problem. What a life eh? Hang in there though, something has got to work somehow, somewhere. God Bless.

June in Toronto (beb/meige)




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Re: Breathing difficulties

Re : Breathing difficulties --- Nancy MacDonald
Posted by Virginia , Dec 27,2001,15:20 Top of Thread Archive
I'm one of those with breathing problems. I've had two neurologists tell me that it is part of the dystonia, but so far nothing we have tried has helped. One doctor didn't have any suggestions at all. The other is trying different meds - Baclofen was the first and it hasn't done anything. I also take Klonopin and that doesn't help either. It is the biggest problem I have right now and I sure wish someone would figure out something that helps. I know I'm not helping any here, but I do sympathize. Let us know what you try - and what works and what doesn't.

Virginia in AL, just back from the airport to send my baby back to college.




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Re: Breathing difficulties

Re : Breathing difficulties --- Nancy MacDonald
Posted by Kelly Saffell , Dec 27,2001,15:49 Top of Thread Archive
I'm sorry your breathing difficulties are causing you such a problem. I have them too but mine is mild and sporadic. I notice that I get very winded when reading to my daughter - maybe because reading is such a struggle. I am on klonopin but I haven't noticed it helping the breathing as much as the meige. I sought a second opinion over the summer from a MDS at the medical school and he said it was probably dystonia but no way to "test". Hope you are able to get relief.
Kelly



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Re: Breathing difficulties

Re : Re: Breathing difficulties --- Kelly Saffell
Posted by Nancy MacDonald , Dec 27,2001,16:08 Top of Thread Archive
Kelly thanks for replying, I just wanted to ask you how long you have had BEB and how long was your process to get SSD



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Re: Breathing difficulties

Re : Re: Breathing difficulties --- Nancy MacDonald
Posted by Kelly Saffell , Dec 28,2001,11:26 Top of Thread Archive
I have had beb for 6 years (age 26 at diagnosis). I continued to work for the first 4 even though I shouldn't have. After my second daughter was born in 1998 I got alot worse for whatever reason. I finally quit in Dec 1999 and had both short term and long term disability policies thru work. It took me 18 months to get ssd approved. Many have gotten it on the first try but I had to go all the way to the hearing process. I don't know if Tx is more difficult or if the fact that I was only 30 at the time was a factor. The hearing, however, was short and sweet. My long term disability carrier provided me with someone who actually flew down and helped me and she was great.



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Re: Breathing difficulties

Re : Breathing difficulties --- Nancy MacDonald
Posted by Dee in OR , Dec 27,2001,17:53 Top of Thread Archive
I have breathing problems too from my dystonia and nothing seems to help. I feel like I am being squeezed in a vice all the time. I went to a pulmonary specialist and he siad there was nothing he could do.

Dee in OR




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Re: Breathing difficulties

Re : Re: Breathing difficulties --- Dee in OR
Posted by Nancy MacDonald , Dec 27,2001,18:10 Top of Thread Archive
Thanks Dee That's what I thought



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Re: Breathing difficulties/nancy

Re : Breathing difficulties --- Nancy MacDonald
Posted by kathy , Dec 28,2001,05:41 Top of Thread Archive
sorry you are having problems. the air is so dry now with the heat on so much, you might try a cold mist humidifier and see if that helps. i have one on in the morning which definitely helps regulate the air and doesn't dry out your nasal passages. i know this is only a temporary solution , but it might help.



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