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guwainengle

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I am not sure if anyone has experienced this as initial breathing symptoms- but here is what happens occasionally... When I sleep I get a" breathing spasm"- to describe it everything is notmal and then in mid-breath I inhale a little harder. After that it all goes back to normal for a while and then it happens again. I do have random fasciculations that the dr tries to say are benign-- but now with this breathing issue I am starting to wonder more--

Thanks-- G
 

guwainengle

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I am not sure if anyone has experienced this as initial breathing symptoms- but here is what happens occasionally... When I sleep I get a" breathing spasm"- to describe it everything is notmal and then in mid-breath I inhale a little harder. After that it all goes back to normal for a while and then it happens again. I do have random fasciculations that the dr tries to say are benign-- but now with this breathing issue I am starting to wonder more--

Thanks-- G
 

captwilly

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I have had this several times and you describe it exactly,

There doesnt seem to be any pattern to the symptoms you describe, but I can tell you that is scary when it occurs. Have you experienced any incoctience at all? Yesterday while out with some f riends, I almost made it to the bathroom, but not quite so not only was I embarrased, but had to sit with wet pants`till we got home. Is a part of the disease or is it just me?
 

guwainengle

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ya know-- now that you mention it-- there are times in the middle of the night I barely make it to the bathroom--- but I do not think it is what I would call incontince-- However it seems like" textbook" versions of ALS don't seem to affect the bladder or bowel if I have read correctly. But there may be something with the breathing issue,
G
 

CindyM

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My ALS clinic disagrees with the idea that bowels, at least, are not affected. MND's affect voluntary muscles, which is why I cannot "hold" my bowels sometimes. Not a pretty sight. I keep a change of clothes in both of our vehicles, plus at my office. If going out for the day with a friend or my daughter I grab a pre-packed tote bag with an adult brief, baby wipes, and a change of clothes. I have only had 2 "public" accidents with my bowels and fortunately we were able to pull over into the woods but not before I made a perfect mess of the car. Now, when I go someplace new, I scope out where the bathroom is first. But it is still unnerving. My niece is getting married this fall, at an outdoor reception at her home. That, for me, is a recipe for disaster. There will be lots of food and drink and lots of guests and only 2 bathrooms. YIKES!

BTW, I have learned to be a tad up-front about these things. One really bad day I had a meeting in a building with which I was unfamiliar. I got there a few minutes early and told the chairperson I needed to use the rest room. It was a stretch - I had no need at the moment. But I was planning ahead. She showed me a public restroom which happened to be occupied at the moment. I could see that, were I in emergency mode, we'd be in a heap (pun intended) of trouble. So I smiled as graciously as I could manage and whispered, "I am afraid I cannot wait."

Bingo- I found out where the staff rest room was and, within the hour, my premonitions came true. Nature called and the public room was busy but fortunately I'd had enough self-preservation to ask ahead. Whew! Cindy
 

patricia1

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Hi Cindy If you are going out for a long time or to a place you are not familiar with They have these depends that are only like thick pads You can wear them for security reasons and god forbid you have a accident or cant get to a bathroom you wont have a worry The new diapers they have really arent bad my motherinlaw uses them and they are very small Just a thought Hope that helps Pat
 

CindyM

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Thanks Pat- I have until October to solve the wedding thing but I was already leaning towards the new diapers. If an accident comes I will need lots of protection, if you catch my drift. Quadbliss (Mike) is the one who helped me cope with this problem. His attitude is that it is what it is and there is no need for embarrassment and no harm from planning ahead.
 

guwainengle

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I was supose to see him on tuesday but I had to cancel-- I got hit by a tractor trailer 2 weeks ago in MD and was not able to drive for 2 weeks-- I had to reschedule and thearlist is now 2 more months-- unfortunately-- I will have to wait-- but it seems like the symptoms are getting more frequent and worse-- so buy that time maybe some actual diagnosed or other thought.
G
 

guwainengle

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Cindy and Pat-- have you been diagnosed with ALS? I have been told that mine is BFS but all roads are leading to a mis diagnosis. It seems like alot of new things keep happening.

G
 

CindyM

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Pat has a definate diagnosed. My symptoms are not bad enough yet for them to say what is going on. I am getting very good at playing the waiting game. There are a few of us in this boat. Some cope by becoming our resident research gurus and I try to fill in by trying to help people overcome the anxiety of not knowing. Plus I check here 2-3 times a day to delete the posts advertising viagra and such.

There are lost of folks on this forum who have been living full and grateful lives for years with ALS. Their stories are remarkable -even more so when I think of the support they lend each other and those of us in limbo. I just want to thank all of you! Cindy
 

landscape

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Hello captwilly:

There's lots of reasons for urinary urgency or incontinence but if all the usual suspects have been ruled out (infection, prostate etc etc) then check out the following site or search for other comments under 'urinary' or 'pee' on this site.

http://www.alsa.org/patient/drug.cfm?id=646
Symptomatic Treatment of ALS - The ALS Association

(You'll need to click on Clip 4 -- urinary urgency)

In the interim any kind of readily available pad (choose according to absorbency needed) stuck in the underpants might help your present situation
 

guwainengle

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I think I am ok there-- but I guess it is better safe than to be sorry-- I don't want to have to experience this in public

G
 

lhagsjr

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whoa

Cindy that is a little too much info...
 
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