Question about Bulbar Symptoms

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trisha p

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Hi Guys,

How are you all? It's been a while since I've posted - I can't believe the time is slipping away. Been involved in helping to plan the Ottawa Walk for ALS. 2 more days until kickoff. I'm very excited about this...

For those of you who remember, my brother was diagnosed with limb onset ALS a little over a year ago. He's doing ok but has lost the use of his arms and abdominal muscles and his legs are very weak now too. His wife has noticed twitching in his throat but he said he doesn't feel it at all.
He does say he feels like he has to clear his throat more often than before - like he cannot clear it well enough. For those with bulbar ALS, did you experience this too? I am just trying to guage whether bulbar symptoms are setting in as well or whether that feeling is a result of the fact that his chest muscles can no longer clear his throat as well (he's lost most of his chest muscles too).

Thanks for any info, as always. I hope you are all doing well and enjoying the (dare I say it) last weeks of summer...
 

dana

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Hi Trisha,
My dad has bulbar symptoms, and one of the things that he does is he clears his throat a lot. This started happening about a month to two months ago. He clears his throat off and on throughout the day. Someone had told me that if you swallow when you have the urge to clear your throat, it helps. How is his speech and/or swallowing? My dad's speech got bad and he had a few choking episodes before the clearing of his throat started happening. I hope that your brother doesn't have to go through bulbar symptoms along with the limb symptoms. Best of luck, and enjoy the rest of your summer too. My family and I sure have been!
Dana
 

Al

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Hi Trisha. Is your brother taking any medications for saliva or phlegm control? I get a lot of coughing sessions at night mostly. Sometimes I will cough a dozen or more times trying to get the crud up. Sometimes it helps if I stand up when I am coughing. I too have lost a lot of chest muscle and need a Bipap machine while lying down to breathe. Is your brother using a Bipap? He may need a cough assist machine. A talk with his Respirologist might be needed. Take care.
 

trisha p

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Hi Al,

So far my brother is only taking supplements from his homeopathic doctor (his general practitioner is bothe ra homeopathic doctor and a regular one). Anyway, I don't think Dwain has seen much of his respirologist yet. He received some sort of oxygen tent to set up (but hasn't yet) to increase his oxygen levels. I am not sure exactly what it is but I know he doesn't have a bipap yet. His breathing is not too affected at the moment except that he doesn't have the force to blow his nose or to raise his voice to a scream (i.e. when the dogs took off after a rabbit and he had to scream at me to go get them...). It's hard because I am in Ottawa and he's in Calgary so I only get whatever information he gives me. Sometimes he tried to protect me by playing things down so I have to ask direct questions in order to get direct answers. If I ask, he tells me, otherwise....

At rest, I don't know how much it bothers him, I'll have to ask. I told him to make sure he sees the respirologist at the end of the month at the clinic. Right now, he just makes a sort of clicking sound with his throat - sort of like when the back of your throat tickles and you rub it with the back of your tongue (that's hard to explain). He's always cleared his throat more than normal. His swallowing is unaffected (no choking or coughing) and he actually speaks more clearly now than before (he's always been a mumbler since we were kids).

Thanks for your advice, I'll definitely keep it in mind for when we talk next. Take care...
 

me

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Good to hear from you Trish and it's good to hear your brother is getting along. Sounds like his wife is a good support for him which really must help. -me-
 

zac111

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can anybody help

i started haveiny twithing in left arm and leg 4 weeks ago since then it moved mainly to my legs now to both my arms.abot a week ago i started haveing problems swalloing like a lump in my throat now it feels like im not geting all of my salivia down.my legs hurt really bad now so i was wondering does als progress this fast in just 1 month im 34 years old any imput would be great.
 

Al

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Hi zac. ALS doesn't usually move that fast but one of the neuropathies does. It's a mouthful but if you get to a neurologist ask him to consider it. It is Pure Motor Chronic Inflammatory Demyelinating Polyradiculoneuropathy. I know it sounds terrible but it is not near as bad as the other neuropathies. AL.
 

anna1980

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Dear Zac, my situation is very familiar to yours, right now Im waiting for my DX.You can read all my posts, my symptoms started 2 months ago and are getting rapidly (although right now nothing changed).Nobody can tell what is it and what is happening.
 

zac111

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well thanks for your replys i have a nerve study and i think its a emg setup in two weeks hope everything turns out ok the doctot said i had no slow reflex if anything a little brisk mabey normal for my age i also have a lot of labwork and a 24 hour urine to test for metals i guesscouldnt quite follow him he was talking real fast ill let you know how it turns out god bless everyone here i know if you beleive and follow god and seek him with all your heart you will be healed there is no dout in my mind so have faith.
 

zac111

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have another question can muscle twithing be involved with another disease besides als ?
 

Al

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Benign fasciculations is a stand alone disease that can bring on fasciculations and not be related to ALS and there are about 6 other MND's that could have them present. AL.
 

zac111

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do they cause pain with them?
 

Al

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Normally I don't think they do. I had cramps and still do occasionally with mine but I don't think it's from the fasciculations themselves. I was getting the cramp pain long before the fasciculations.
AL.
 

zac111

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thanks so very much its been almost 4 weeks now and the twithing and jerking in legs is regular and the pain in my legs is awful guess i was just hopeing als wouldnt come on this quick still dont have any falling are dropping things.
 

CBowman

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zac111 said:
i started haveiny twithing in left arm and leg 4 weeks ago since then it moved mainly to my legs now to both my arms.abot a week ago i started haveing problems swalloing like a lump in my throat now it feels like im not geting all of my salivia down.my legs hurt really bad now so i was wondering does als progress this fast in just 1 month im 34 years old any imput would be great.
Zac,

Hi, my name is Chad. I am 34 years old also and my problem started with twitching and tight calves. Then a left foot drop occured about 2 weeks after the tight calves. The ortho doctor said I must have banged my leg on something and gave me a foot drop brace. This was 4 months ago, now my left leg (hamstring, quad, calf, and foot drop) is almost useless. My right leg only has a few weaknesses. I am going to the Mayo clinic because my Nero doctor wants someone else to look at me. He said the leg has progressed to fast to be ALS but I have brisk reflexes in my knee which is a sign of ALS. I am trying to book my flight today. In addition, I have had two rounds of IVIG. It seemed help the little bit of weakness on my right side but my left side continued to weaken. My MRIs showed to be normal. I am woried that I have ALS.
 
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