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Geo
Senior member
- Joined
- Aug 24, 2007
- Messages
- 500
- Reason
- DX UMND/PLS
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- 12/2001
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- Florida
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- Ruskin
Well first off Betty . Get your Medical records . ask for them and its the law they must render them . Ive had this problem so i know . Read and learn how to interperet them . Because your problably not going to get all the info you deserve. From what you've said you had 2 good EMGs this in itself is good news ,this means the nerves seem to be getting the electrical signal and are not dieing . I have been to over 30 different docs and learn how Dumn these people really are . I use to have the utmost respect for the Medical Profession . have this no longer . Like ive said on here many times . Educate yourself and learn and you will see how little these people really know . But errogance will not let them tell you what you should know . Geo
Zaphoon
Extremely helpful member
- Joined
- Aug 2, 2008
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- 2,857
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- DX UMND/PLS
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- 08/2011
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- Missouri
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- Springfield
Betty,
The reason for the spinal tap could be they're checking for MS one more time.
Peter,
I like the comment regarding Cooper's being a meal in a bottle.
Zaphoon
The reason for the spinal tap could be they're checking for MS one more time.
Peter,
I like the comment regarding Cooper's being a meal in a bottle.
Zaphoon
mare
Senior member
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- 771
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- Lost a loved one
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- Lafayette Hill
PZ- I find it interesting that you describe your voice/speech as gravelly & not slurred.
That is the way I describe Jim's speech; and, not all the time- mainly when he is trying to project his voice (like in a crowd) or at night when tired. In fact, one of his early "complaints" was that he couldn't project his voice (he was a lecture at church)
He also had larnygospasms (occasionally) & a "funny" feeling in his throat. He was sent to an ENT who scoped him, then sent him for barium swallow which showed a hiatal hernia. The ENT then thought acid reflux (as these symptoms are similar).
Started Zantac & Prilosec; not much of a change. This was simultaneous with "changes" in right leg; fast forward to seeing als specialist, EMG etc.
Speech pathologist thought the larnygospasms might be due to bulbar issues. Neuro said he never saw bulbar start with that (since only LMN symptoms diplayed- no clinical evidence of UMN). But, did start Clonazepam & saw ENT familiar with ALS.
He scoped him & did a more through exam ("was able to see 90% of what I wanted") with much difficulty (hypergag reflex?) & saw slight weakness on right side of "false-cords". Again, mention of acid reflux vs. atrophy; would need EMG to determine cause.
BUT, interestingly, after starting the Clonazepam, his spasms stopped AND the yawning
(excessive/exaggerated) decreased! Which lead me to think they were UMN symptoms!
And, they are- pseudobulbar! Which are UMN in the bulbar regions.
So, I have no research or studies or trials or even the doc's say-so behind me;- but I'm thinking he has LMN dominant ALS! Just because he hasn't seen it, doesn't mean it doesn't exist!
I never "bought" the acid reflux thing- he just never had a problem before.
I'm thinking the "projection of voice", the laryngospasms, the gravelly speech is more an UMN problem all within the bulbar region. This is very slow progression, by the way.
This all started in Nov. 2006 (that we can recall); and to this day, not even his family have commented about his voice. (I realize, though, that they just don't want to upset us. I have never come out & asked them about this!)
DISCLAIMER: I am not a doctor; I have not been told this by a doctor; these are only my opinions, AND I have had 2 glasses of wine tonight!
That is the way I describe Jim's speech; and, not all the time- mainly when he is trying to project his voice (like in a crowd) or at night when tired. In fact, one of his early "complaints" was that he couldn't project his voice (he was a lecture at church)
He also had larnygospasms (occasionally) & a "funny" feeling in his throat. He was sent to an ENT who scoped him, then sent him for barium swallow which showed a hiatal hernia. The ENT then thought acid reflux (as these symptoms are similar).
Started Zantac & Prilosec; not much of a change. This was simultaneous with "changes" in right leg; fast forward to seeing als specialist, EMG etc.
Speech pathologist thought the larnygospasms might be due to bulbar issues. Neuro said he never saw bulbar start with that (since only LMN symptoms diplayed- no clinical evidence of UMN). But, did start Clonazepam & saw ENT familiar with ALS.
He scoped him & did a more through exam ("was able to see 90% of what I wanted") with much difficulty (hypergag reflex?) & saw slight weakness on right side of "false-cords". Again, mention of acid reflux vs. atrophy; would need EMG to determine cause.
BUT, interestingly, after starting the Clonazepam, his spasms stopped AND the yawning
(excessive/exaggerated) decreased! Which lead me to think they were UMN symptoms!
And, they are- pseudobulbar! Which are UMN in the bulbar regions.
So, I have no research or studies or trials or even the doc's say-so behind me;- but I'm thinking he has LMN dominant ALS! Just because he hasn't seen it, doesn't mean it doesn't exist!
I never "bought" the acid reflux thing- he just never had a problem before.
I'm thinking the "projection of voice", the laryngospasms, the gravelly speech is more an UMN problem all within the bulbar region. This is very slow progression, by the way.
This all started in Nov. 2006 (that we can recall); and to this day, not even his family have commented about his voice. (I realize, though, that they just don't want to upset us. I have never come out & asked them about this!)
DISCLAIMER: I am not a doctor; I have not been told this by a doctor; these are only my opinions, AND I have had 2 glasses of wine tonight!
Zaphoon
Extremely helpful member
- Joined
- Aug 2, 2008
- Messages
- 2,857
- Reason
- DX UMND/PLS
- Diagnosis
- 08/2011
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- US
- State
- Missouri
- City
- Springfield
Mare,
I got to where I could tell when my voice was going to start getting gravelly and weak. These tiny vibrations could be felt near my larynx, sort of like little fasciculations. I would also find myself clearing my throat a lot. It was happening fairly regularly for a while but seems to have decreased in frequency/regularity. I'd also have to double swallow saliva when the voice was going in and out.
Makes me wonder...
PZ
I got to where I could tell when my voice was going to start getting gravelly and weak. These tiny vibrations could be felt near my larynx, sort of like little fasciculations. I would also find myself clearing my throat a lot. It was happening fairly regularly for a while but seems to have decreased in frequency/regularity. I'd also have to double swallow saliva when the voice was going in and out.
Makes me wonder...
PZ
tdamess
Very helpful member
- Joined
- Jul 29, 2009
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- 1,297
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- Loved one DX
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- 07/2009
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- ma.
- City
- halifax
thank you for answering my question..and viral could be the problem as they dont know what start's it and they are trying antibotic's trial's now food for thought
Geo
Senior member
- Joined
- Aug 24, 2007
- Messages
- 500
- Reason
- DX UMND/PLS
- Diagnosis
- 12/2001
- Country
- US
- State
- Florida
- City
- Ruskin
Yah ,Antibiotics are basically for infection or antibacterial . AntiViral is what your Looking for ,Problem is when the wrong one is administered you may get Devistating affects Some have been proven to work on certain Viruses ,Slow and Tegious Process , I took some in the beginning Ammantadine ,Acicylicor ? and another no bad side affects and no results . The Doctor i asked to Script it said what for ? I had to take in a copy of the Study to show him ,he was reluctant but did it anyway . Geo (ps) your going to have a hard time getting them to step out onto the limb.
Big Mike
Distinguished member
- Joined
- Jan 2, 2009
- Messages
- 323
- Reason
- PALS
- Diagnosis
- 12/2008
- Country
- US
- State
- Montana
- City
- Fairfield
I get tiny little, brief fasciculations, or whatever they are, down in my throat as well. Swallowing is still good except for an occasional little problem with skins of fruits that's been going on for many months. Does anybody else get these throat fasciculations?
prosons
Member
- Joined
- Apr 18, 2009
- Messages
- 14
- Reason
- PALS
- Diagnosis
- 04/2009
- Country
- US
- State
- Vermont
- City
- South Burlington
Hi Mike,
Would you describe to me the extent of your LMN symptoms? I have been told my ALS is predominant UMN with mild LMN in upper extreities. I was wondering at what rate atrophy occurs in general. I know its different for everyone. I appreciate the info. If you want, email me at: frank@prosons>com
Thank You so much!
Frank
Would you describe to me the extent of your LMN symptoms? I have been told my ALS is predominant UMN with mild LMN in upper extreities. I was wondering at what rate atrophy occurs in general. I know its different for everyone. I appreciate the info. If you want, email me at: frank@prosons>com
Thank You so much!
Frank
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