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nsmith555

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Hello to all who may read this,
Well, today at my mom's neuro visit, he thought she needs to undergo the EMG - which she agreed to (March 22). He also suggested she begin to see a pulmonologist as she is experiencing some breathing difficulty at night and, as he explained, if she ultimately is diagnosed with ALS, there are going to be respiratory issues which will need to be addressed - basically, to what lengths is she willing to go.

He wasn't able to provide much help with her drooling problem - the only med he discussed (and I can't remember the name) had as a contraindication making muscles weak, which he did not want to do, so he didn't want to give it to her. Does anyone have any suggestions in this area?

She swears she has no issues with her limbs. Does anyone know generally the progression of bulbar onset ALS? How long is it usually until extremities are affected? Does anyone know of a case of bulbar onset ALS which never did affect the extremities? I can't find any internet research on that.

Sorry so many questions when we don't even have a true diagnosis. I just want to be prepared. I hope you understand.

Thanks in advance for any help!
Nicki
 

midwestgirl

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Nicki, my mother has excess secretions/drooling so we are using Trans Derm patch, which seems to work well for her. She has less saliva to swallow, so it is easier for her to eat and swallow - although she still drinks thickened liquids. She also does well with chocolate milk and tomatoe juice. Some days just seem worse than others for whatever the reason, so she usually keeps a towell with her to dab any drool. My mother started with limb onset - mainly her left leg which was originally diagnosed as foot drop. The other is weak, but it doesn't seem to be affected near as much.
A gentleman at a support group I attend has bulbar onset only, and has had it for two years. He said he has not had any muscle weakness in his arms or legs. This seems to be the exception, rather than the rule, for having bulbar onset for two years. He is just starting to have breathing problems, so he is looking in to bipap.
 

midwestgirl

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One other thing I just thought of is I had to get prior authorization from moms insurance to cover the Trans Derm Patch for longer than one month. It is normally used for motion sickness, with a side effect of drying up secretions. We tried it first to make sure it would work, and didn't dry her too much (eyes, constipation, etc) So far, so good.
Good luck!
 

nsmith555

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Thanks for that info. There was some concern w/the neuro about drying up more than just the saliva, so he didn't seem to want to go that route. My mom (bravely) said she could deal with the drooling, then took a handful of kleenex out from her purse. I know that's the main reason why she is avoiding going out in public much. I'll tell her that in your mom's experiences it did not seem to cause excessive drying up! Thanks again!
 

Al

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Hi Nicki. Was the drug he suggested Elavil or Amitryptiline. You can start at 10 mg and it will help dry up saliva and it doesn't usually have side effects at that low dose . At least it didn't for me.
AL.
 

nsmith555

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Well, Al, I'm not sure - I can't remember what he said, and I'm so bad about remembering drug names - they all sound so 'foreign'! :)
I'll ask about those you mentioned the next time we go in.
Thanks!
 

JACKIEMAX

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questions that need answers, please

i have been reading these particular posts, and have some questions. first, what is the trach/vent - and what is it for, and what needs to be going on to get it?

also, can an als patient have 'only' limbset symptoms? my husband was diagnosed a few months ago, but has had symptoms for a little over a year now. he gets weaker every week or so, and now can do absolutely nothing but sit and watch tv or read. it wears him out to take a shower or just walk around the house.

is there a chance he will not have bulbar symptoms at alll? and if he does get them, at what stage will they develop? he sleeps with a bipap now, and if he lays down for a nap, he has the nose thing/oxygen. his breathing is not good at all.

our lives have been turned upside down, and we live in constant frustration of not knowing what will happen next. we are thankful that he is doing as well as he is, and i am thankful that at age 69 with osteoarthritis myself, that i am able to take care of him.

with these particular symptoms, can anyone tell me what we might expect next? i want you all to know that i feel a deep feeling of empathy and compassion for each and everyone of you. you have been a lifesaver for both him and me. and for this we thank you.

jackiemax
 

Al

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Hi Jackie. Here is a site with some information about respiratory issues. If you have a look at it then you'll be able to ask more specific questions.
http://www.als-mda.org/publications/alscare/caring.htm#respir
Go about half way down the page to get to the breathing info. If your husband has a Bipap for sleeping he should NOT be having naps without the Bipap on. His breathing is weak and he needs the Bipap to give his lungs rest time and to help keep the oxygen level up and get rid of the carbon dioxide.
I know about being tired after a shower or walking around a bit. This is ""Normal"" with ALS. Some of us get it early like your husband and some of us get it later. We will all get it though.
Try to stay strong. It's not easy I know.
AL.
 

thomkat

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Hi Nicki-
My husband did get too dry using the patch. So we switched to Levsin. It works well for him so far and can be taken every 4 hours. (So if he gets too dry, we can just wait until he needs it again.)

Kathy
 

nsmith555

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Thank you Kathy, I'll ask the neuro about that on Thursday when I accompany my mom to her EMG.
 
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