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lummylam

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I am an occupational therapist that works in a level II acute care trauma center. I am 43 years old. I see PALS in my daily work so I am familiar of the symptoms. I am also a neuro specialist and work with patients with all kinds of neurodegenerative disorders.
I am watching my body disintegrate in front of me, my muscles are twitching and cramping, and I have a poor swallow (aspirating on my saliva at night, water during the day). My tongue moves around in my mouth a bit crazily and I am having garbled speech. My head is difficult to hold up on its own without support of my arms, especially after a full day at work. I cannot lift things I once did, having to ask my children to perform the lifting for me. My balance is impaired and I have had a few close calls, but able to regain my balance prior to full falling. My MRI, blood work, and other tests are all negative except my swallow evaluation. I was found to have profound swallowing weakness. I know my neurologist personally and have not told him I think it may be ALS.
My questions:
Since my symptoms are not one sided, and weakness is throughout my entire body, I am hoping for guillan barre' syndrome, but I have never seen anyone with tongue fasciculations like this before with GB.

Since I am having trouble breathing at night, respirations from 22 breaths per minute to 8 breaths per minute, I fear bulbar symptoms. I wake up with severe headaches when my wife notices this in me. She is worried to fall asleep at times. I am now sleeping in a recliner, but I aspirate. Do you have recommendations for sleeping positions? Bipap or Cpap is 3 weeks out minimum (any other suggestions)?

I am losing my memory, so I try to use memory strategies but this is half effective. Do others suffer from memory issues as well?

I appreciate your replies in advance. I really have a deep respect for anyone affected by any neurological process and that is why I am in this field. I love my patients and my job.

Thanks,

Lummy
 

lgelb

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Lummy,
Did you have EMG/NCV testing? What is the diagnostic plan?
Why is PAP weeks out? If you have need, your neuro should be able to work out a DME loaner, even if you need sleep testing first. If the recliner is better, I expect you know to add pillows or buy a bed wedge.
Has MG been ruled out?
 

Nikki J

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Disagree with Atsugi unfortunately. Cognitive issues are quite common. FTD less so and it classically starts with executive function issues rather than memory. However my mother's first symptoms were memory then FTD then ALS. I definitely know PALS who don't have full blown FTD but have some memory issues.

That said you must be under so much stress that could contribute to memory dysfunction.
Given the title of your post I think you are waiting for an EMG that is scheduled? I would talk frankly with your neuro. I understand about not wanting to jump the gun or appear to tell him his business but if you having such difficulties he should know and perhaps your testing can be expedited? I know you don't want special treatment but as a colleague in a very tough position I think you are entitled to a little
 

lummylam

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Thank you all for your replies. I have a friend that is a sleep study tech, he is trying to get me in sooner, but the city I live in is growing fast, has only 3 centers, all are full until the 17th of November. I am on the cancellation list, but they say nobody ever cancels. I am going to try to borrow my neighbors machine and going to get a new mask, but I think they need calibration for me prior to me using it.
As far as the being frank with my Dr., he is personally not wanting to say because he is a personal friend and wants to make sure and rule everything else out, I respect that. He will be doing the EMG study on the 9th of November. Do you guys know how long it takes for results?

Thanks again!

Lummy
 

lummylam

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lgelb, thanks for asking, MG has been ruled out, yes. All testing is complete except for EMG. No mention of ALS as of yet by me or the doctor @ this point, that is why I am posting here. I figure the medical community has knowledge, but those with symptoms and with a diagnosis should automatically get an MD since you know so much more.

Thanks again,

Lummy
 

Nikki J

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For EMG results they can tell you right away. If your neurologist is doing the EMG he almost certainly will. many of us were told while still on the EMG table.
 

Annie's Phil

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Disagree with Atsugi unfortunately. Cognitive issues are quite common.

My experience with ALS affecting memory echoes Nikki's comments. I remember Annie and her PALS friends here jokingly referring to their cognitive difficulties as "brain fog" or "ALS Brain". Your depressed respiration rate and morning headaches suggest increased blood CO2 levels, which will also affect cognition.
-Phil
 

lgelb

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Lummy, thx for clarifying -- was not sure if this was repeat testing.

If you borrow your neighbor's [assume CPAP] machine and set it to an IPAP of 8 with max EPR, you won't be doing anything risky. If it doesn't have EPR, you could set the IPAP to 4. You can do a trial w/ your wife standing by, but even being able to read/record basic data could be helpful heading into your sleep study.
 

lummylam

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Thanks for the information lgelb, I am using the CPAP machine and it has helped. Now I am sleeping better and have been able to even sleep without the machine most nights now! It appears the tremors I was having and tightness in my diaphragm and intercostals has subsided. Is that common to have fluctuations such as this depending on the night, or do PALS generally just worsen and never improve with respiratory status. I am beginning to question whether the fasciculations and loss of muscle is really ALS. I really hope it is just me making it up in my head, but my wife is sure that she is seeing ongoing changes, notices tremors at night, and I am having some continued struggles with aspiration (although not as frequent).
 

lummylam

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Clean emg! On to heavy metal testing. Thanks to you all who responded to my post! Still many fasciculations, but none were dirty. ? BSF per MD, unsure why muscle loss L leg & general fatigue.
 

Nikki J

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Thank you for letting us know. Hoping they find a good fixable answer. If you will, we would appreciate another update when they arrive at a diagnosis. It is helpful for us to knowand even more so for future people with worrisome symptoms
Best of luck
 
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