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ttsparty

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Jan 20, 2014
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Loved one DX
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Michigan
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Lansing
My dad is in his early 70s and has been having symptoms for about 9 months. It started with slightly slurred speech, nothing major but he sometimes sounded drunk. He has been experiencing a lot of saliva and mucus. He clears his throat all the time and sometimes feels like it's closing and he has a hard time swallowing. He also has occasional cramps and twitches in his lower legs. None of the symptoms occur all the time - some days are almost normal and he feels great. Other days the symptoms kick in and he gets really depressed. He has not lost any marked muscle strength and I believe the fatigue he has comes from his more depressed moments. He has had multiple MRI, blood tests and an EMG. All have been normal. Three neurologists have ruled out ALS (as well as the doc that did the EMG) and have been treating him for MG. A 4th neuro insists that she sees muscle twitches that the others have not and has scheduled a 2nd EMG. Her demeanor causes my dad tons of stress and I worry that her personal bias (her own dad has ALS) is interfering with her ability to be objective. Some days are great and others are horrible. The mucus/throat clearing is the most obvious symptom now but others occur occasionally. Based on others' experience, does this sound like ALS? What stands out to you? Any advice on how to handle the doctors? Thanks tons - I'm worried about the stress for both of my parents at this point.
 

dynamix

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Joined
Jan 22, 2014
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9
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Loved one DX
Diagnosis
08/2011
Country
US
State
MN
City
Duluth
I'm sorry to hear about your father's symptoms.

My father presented with limb onset ALS... drop foot in the leg. Noticeable change in his ability to walk, change in his gait, compensating with the other leg. The affected leg seemed to almost drag behind.

As the disease has progressed, we have noticed a change in his speech as well as frequent clearing of the throat. We noticed first the clearing of his throat, forced cough, as well as frequent yawning. This started 6-9 months before we noticed any change in speech. As time has passed, he has difficulty clearing his throat. Not simply clearing it often, but an actual inability to force enough strength to really clear the throat. I don't know how to describe it other than it no longer sounds like a typical clearing of the throat.

While my dad's strength varies from day to day and even varies within any given day, one thing is certain: he has never regained the ability to speak normally. In the early morning, before his strength wanes, he can talk and be understood very easily. But even then he struggles with particular syllables or consonant sounds. Likewise with clearing of the throat, when we noticed the decline in ability to clear his throat, he has never regained the ability to really force the air through to clear the throat of phlegm like he could before diagnosis. This to me is an important distinction. "Good days and bad days" sure, but never fully able and then unable, and then fully able again, and then unable again. It has been a constant decline.

I don't know whether this is helpful or not, but it's been our experience.
 

olly

Extremely helpful member
Joined
Jan 10, 2008
Messages
2,732
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PALS
Diagnosis
11/2007
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uk
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uk
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uk
It would not hurt to go along with the 4th neuro....she has put als in your mind and you would be left wondering if she was right...not saying she is.
If he is on treatment for MG and its not working then obviously further investigations are needed.
Fasiculations can be seen in other illnesses besides als....some with pls like myself have them,patients with MS also...probably due to nerve or muscle irritation and are benign.
Wishing the best for your dad.
 

ttsparty

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Jan 20, 2014
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Loved one DX
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US
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Michigan
City
Lansing
Thanks for your feedback. It is helpful to hear from people dealing with this first hand rather than just the doctors. All the best to you and your loved ones as well!
 

Mediasmart

Distinguished member
Joined
Nov 4, 2013
Messages
392
Reason
PALS
Diagnosis
08/2013
Country
US
State
NY
City
Orient
@patrickmore....Your descriptions and exactness are extremely useful. Pls. continue your observations as they are a great source of realistic information for those in limbo.
 
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