Mums gone, but was it ALS

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Whispa

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Hi all.
I lost my mum a few days ago, and right til the end doctors were hesitant to actually call it MND, just that it was equally devastating. Noticable symptoms started approx 18 months ago, but may have been earlier but subtle. She had weakness and loss of balance in legs, worse on the right. Initially speech started to occasionally slow during some sentences, and eventually became permanent. We dragged her every doctor and test we could but due to covid most were unavailable til only a month or so back.

2 weeks ago she had another fall and went to a different hospital via ambulance. From there it was downhill fast but before and up til the end, there was the leg weakness, slow and slurred speech, swallowing issues, severe sleep apnea and crippling fatigue. However everything was still working, slowly but there was no actual failure. Aside from a walker and a few Kmart aids she was living independent until hospital. Steroids were tried at one point and massively improved things for 2 days before going down again. She only managed to get a cpap machine 4 days before hospital but one of those days was again major improvement.

But once in hospital, leg weakness, speech and swallowing got worse and eventually she was in so much pain from being bed bound, that she was sedated, and eventually just stopped breathing. But she still had full use of arms and could write til the end and could still move her feet just not stand. Nerve conduction study was mostly clear, mri and ct scans all clear besides spinal pinched nerve. Very little fasticulations or atrophy until last 2 days. She did have the uncontrollable crying, was very pale from low oxygen and her features went back to almost child like towards the last few months looking back on photos. I know it’s never going to help or bring her back but just curious if anyone has seen this variant before?
 
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Clearwater AL

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Whispa, did your Mom ever have an EMG? How old was she? Sorry for your loss.
 

lgelb

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I am very sorry for your loss, whatever the cause. You haven't described any MND variant that I know, but there are hundreds.

You do not mention an EMG, which might have supported MND, Guillain-Barre, or myasthenia gravis, as examples. Even the imaging could have missed small strokes, bleeds, or clots. The smoothing of features could support a neurological or vascular cause. There are a number of possibilities,

Of course, post-mortem examination/autopsy would provide more of an answer. I am not sure where you stand on that.

At any rate, you have suffered a great loss rather suddenly and I hope you can reach out to others who knew her, and give yourself time to process.

In sympathy,
Laurie
 

Whispa

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Thank you for the replies. I’m fairly sure an EMG was conducted at the same time as the nerve study (little electric pads taped to various places??) we never actually got the results as the tech panicked and took them straight next door to her dr at the time, but when I ran into her dr the other day (not a neurologist but physician in the field, we were never able to get to a neurologist no matter how we tried) the physician was shocked as she had seen her only days prior still functioning. She mentioned that those tests were only suspicious of MND but didn’t show enough evidence. And legs were clear yet I took her in the room to show mums legs that wasted away within 2 days. We had wanted further MRI done but as mum couldn’t breathe laying on her back she was too afraid. Moyes then is Gravis was tested fir and ruled out earlier along with statin myopathy, thyroids, ataxia and any other thing we could possibly think of 😔 brain damage from severe oxygen deprivation from 2 forms of sleep apnea have been considered, but we will never know as sleep study was ordered for 12 months ago but due to covid was only completed a month ago. She had all odds against her getting help which was frustrating, but in hindsight I think that helped her live a reasonably normal life til the end, out of stubbornness. She didn’t want an autopsy and was cremated today 😔 another thing by the end was even though she could use her arms and hands as normal, she couldn’t feel any of the needles or IVs going in? And lots of hair had started to fall out in the weeks leading up.
 

Nikki J

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I am very sorry. Losing a parent is so hard and being left with so many questions makes it even harder.

perhaps, after you have had a chance to grieve, if you are still questioning and want to know more, you can ask her doctor to review her records with you We can only say it sounds very very atypical

Take care of yourself
 
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