A 6 month journey: Is this bulbar MND?
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- 14,274
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Agreed. BMI above target is a key risk factor for obstructive sleep apnea, which a PAP can easily address. If you are waking yourself up, get a sleep study.
Katy Sunshine
Member
- Joined
- Jan 14, 2016
- Messages
- 20
- Reason
- PALS
- Diagnosis
- 2/2016
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- US
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- FL
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- Panama City Beach
Hi K,
I am so sorry this has been so debilitating for you. I'm new here, but I felt compelled to respond. I may not be able to answer as to whether or not this is Bulbar ALS. Having said that I can tell you what I have and have not experienced myself. I was diagnosed with Bulbar Onset ALS a month ago after 9 months of rigorous testing. I so hope this helps and in some small way puts your mind at ease in some areas. Again, this is just my experiences and I'm told that two people hardly go through the same things in the same order
Since my symptoms began, I have never:
Had twitches in my extremities. (Other than a mild tremor in my right hand, which is probably more of a nervous thing than a nerve thing)
Had a normal EMG or NCS
Been able to "down" a lot of water. (I'd certainly choke to death after the first teaspoon)
Been able to run any distance, I'm far too fatigued and get winded too easily.
Thought my tongue was getting smaller. (Mine actually feels too big for my mouth)
Wondered if my speech was slurring. (Most people cannot understand anything I say)
Put on weight (Choking on food and the fear of choking on food prevents it)
I hope this helps. As everyone else here has stated, if your tests are for the most normal and your doctors are telling you things are normal, it is best to listen to them. Good luck to you. I hope everything turns out well and that this helps.
Katy
“Hope” is the thing with feathers -
That perches in the soul -
And sings the tune without the words -
And never stops - at all -
I am so sorry this has been so debilitating for you. I'm new here, but I felt compelled to respond. I may not be able to answer as to whether or not this is Bulbar ALS. Having said that I can tell you what I have and have not experienced myself. I was diagnosed with Bulbar Onset ALS a month ago after 9 months of rigorous testing. I so hope this helps and in some small way puts your mind at ease in some areas. Again, this is just my experiences and I'm told that two people hardly go through the same things in the same order
Since my symptoms began, I have never:
Had twitches in my extremities. (Other than a mild tremor in my right hand, which is probably more of a nervous thing than a nerve thing)
Had a normal EMG or NCS
Been able to "down" a lot of water. (I'd certainly choke to death after the first teaspoon)
Been able to run any distance, I'm far too fatigued and get winded too easily.
Thought my tongue was getting smaller. (Mine actually feels too big for my mouth)
Wondered if my speech was slurring. (Most people cannot understand anything I say)
Put on weight (Choking on food and the fear of choking on food prevents it)
I hope this helps. As everyone else here has stated, if your tests are for the most normal and your doctors are telling you things are normal, it is best to listen to them. Good luck to you. I hope everything turns out well and that this helps.
Katy
“Hope” is the thing with feathers -
That perches in the soul -
And sings the tune without the words -
And never stops - at all -
krl111
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- Joined
- Feb 18, 2016
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- 8
- Reason
- Learn about ALS
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- UK
- State
- Greater Manchester
- City
- Manchester
Dear All,
Thank you so much for your replies - I truly appreciate you dedicating your time to answer my queries.
I agree with Mike that Katy's response is a very important read, thanks once again for posting.
My constant left calf fasics, widespread intermittent twitches and spasms/jerks still concern me but I am trying my best to move on. I should be seeing my neuro in about 5 weeks' time so will keep you posted with the outcome.
Sincere best wishes
K
Thank you so much for your replies - I truly appreciate you dedicating your time to answer my queries.
I agree with Mike that Katy's response is a very important read, thanks once again for posting.
My constant left calf fasics, widespread intermittent twitches and spasms/jerks still concern me but I am trying my best to move on. I should be seeing my neuro in about 5 weeks' time so will keep you posted with the outcome.
Sincere best wishes
K
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