Joanne M. - I've got what you've got


Posted by Virginia , Jul 20,2001,17:37   Archive
I finally saw a neurologist about the breathing problems (among other things) and he said it's my diaphragm. It surprised me some because I don't notice it there, but after he explained the anatomy of it, it made some sense. We can compare notes in Scottsdale.

Virginia in AL




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Re: Virginia, Breathing Problems

Re : Joanne M. - I've got what you've got --- Virginia
Posted by Mindy , Jul 20,2001,21:43 Top of Thread Archive
Hi Virginia,
I would appreciate it very much if you could post the explanation your doctor gave you? Does it have anything to do with throat spasms?
thanks,
Mindy



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Re: Virginia, Breathing Problems

Re : Re: Virginia, Breathing Problems --- Mindy
Posted by Virginia , Jul 22,2001,10:46 Top of Thread Archive
Mindy,
I'm accepting his diagnosis for now, but still not 100% convinced. That's why I would like to talk more with Joanne to compare notes. As she said, it was by eliminating other possibilities and theorizing that he arrived at the diagnosis. He just said that the breathing muscles worked together and extended from the diaphragm to the throat and nose, and that it is possible that spasms in the diaphragm would be observable in the throat or nose and not necessarily in the specific area of the diaphragm. He also said that my breathing appeared "jerky" which also led him to the diaphragm diagnosis. I do appear to have spasms in my neck, but I ordinarily feel the breathing problem in my nose. When it is at it's worst (thankfully, not very often - it's been 6 weeks or so since it last happened) I have increased tightness in my throat and chin and do have difficulty speaking more than a few words at a time. Episodes like that are practically impossible to recreate on demand for doctors to observe. Guess I'm going to have to do the video tape thing if it happens again.

I do find that conscious, deep, regular breaths help me get past it and I have enough control of my breathing to do that.

Hope I answered your questions,
Virginia in AL




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Re: Joanne M. - I've got what you've got

Re : Joanne M. - I've got what you've got --- Virginia
Posted by Joanne Matuzas , Jul 21,2001,13:57 Top of Thread Archive
Virginia, thanks for the post. My understanding is that the diagnosis
of diaphragmatic dystonia comes partly by the process of elimination.
To me it does feel like it could be in the throat area but I have had
some tests for that and they believe it's the diaphragm that is spasming. Evidently this is quite uncommon and the only relief I get
from it is meds, and even at that the relief is far from complete.
We will definitely talk in Scottsdale; I am looking forward to meeting with you. Imagine having somewhat of a rare disorder and ours is even more so with this breathing complication. And we found each other on
this BB!!! By the way, I am attending the meeting of our San Diego's chapter of the Dystonia Group this afternoon. Maybe I'll obtain a bit more info. Take care...Joanne M. San Diego, CA



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Re: Joanne M. - I've got what you've got

Re : Re: Joanne M. - I've got what you've got --- Joanne Matuzas
Posted by Mindy , Jul 21,2001,18:59 Top of Thread Archive
Hi Joanne,
What puzzles me is the doctors feel it is an uncommon
problem.
But there are many of us that do have this problem.
Thanks to this BB, we are able to hear just how many
there. Because of this sharing, many are being helped with
Benadryl.
Maybe at the conference you and Virginia can somehow get a
better idea of how many others are dealing with this problem.
And then let the doctors in on this. Many doctors still seem
to think it's in our heads.
Do you ever find that at times it's hard to get the words out
when you try to speak?
hugs,
Mindy



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Re: Joanne M. - I've got what you've got

Re : Re: Joanne M. - I've got what you've got --- Mindy
Posted by Joanne Matuzas , Jul 23,2001,14:03 Top of Thread Archive
Mindy, we all know this is not in our heads...seems more to me that
it feels like stuttering but maybe that is related to having trouble
getting the words out....Joanne M. San Diego, CA



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Re: Joanne M. - I've got what you've got

Re : Re: Joanne M. - I've got what you've got --- Joanne Matuzas
Posted by Virginia , Jul 23,2001,15:00 Top of Thread Archive
I'd forgotten that Mindy had asked about speaking. Yes, it does sometimes feel like it's hard to get words out. Sometimes I feel like people will get impatient listening to me because I pause for what seems to them like no reason.



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Re: Joanne M. - I've got what you've got

Re : Re: Joanne M. - I've got what you've got --- Virginia
Posted by Mindy , Jul 23,2001,15:40 Top of Thread Archive
When this happens to me, mine is more "pause" than
stutter. And my breathing is more "jerky", but I feel it more in my throat. I can have better control also when I conciously
breathe more deeply.
The only things that get in my way at this point, is not
being able to drive and carry on a conversation at the same time, because my eyes will close.
And from time to time my eyes will close when I am speaking to someone,
or reading out loud. I am very grateful that these are my biggest problem.

Interesting Joanne mentioned stuttering. The other day
on TV they had a segment on stuttering. The doctors
are finally learning that stuttering is a result of
faulty brain signals, and has nothing to do with
being nervous. What I've learned about stuttering and Tourettes syndrome has given me a better understanding of others with neurological
problems. I can relate to all the inward physical and emotional struggles they are dealing with that no one sees.
Mindy




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