My Dad (69) has very concerning symptoms.

[Sifmode]

Hello everyone ,

I have been lurking on this forum for the past weeks looking for informations.
My dad gave me a call in early february saying he hurt his back neck carrying a microwave(!) a few weeks before.
He said it almost didnt hurt but that he developed right arm weakness and a head drop.I got a bit concerned and moved in with him to help him.He went to the hospital where they diagnosed him with herniated cervical disc(CT scan).
Now two months in he´ s got troubling breathing (cant walk more than 50 meters) , visible atrophy and fasciculations in his arm and tonight he has told me that he cant really swallow properly.
He s got an EMG scheduled in two days and an MRI in early april.
He has no pain now , no sensory problem , only weakness.
I know i should have waited at least for the EMG but the new swallowing problem just worried me a lot , i had als in a part of my mind since the arm weakness but thought the most probable was the herniated disc which apparently could cause these symptoms.
I´ll come back with the EMG results but i have two questions :
1) Is it possible for ALS to progress that fast ?
2)IS an EMG enough to differentiate between ALS and a herniated disc or is the IRM mandatory to be sure ?

English is not my mother tongue so dont be alarmed if my grammar doesnt make sense.
Thanks a lot for your precious time

 

[Nikki J]

That would be very fast but not impossible

The criteria for diagnosis state that emg findings that look like ALS require ruling out other causes through imaging ( mri) and other tests. However sometimes it is widespread enough it can’t be anything else or abnormal in a way that clearly isn’t ALS.

You are describing issues in three regions. It would not be surprising if this is ALS that they will find emg changes in asymptomatic areas.

I hope you find another answer. Make sure your father tells his doctor everything

 

[Sifmode]

That´s a very clear and concise answer , thanks a lot.
I´m going to the EMG appointment with him so i´ll make sure to ask the correct questions and report every symptoms.
Damn , i´m usually a very calm and rational guy but this stuff is detroying me mentally.
I´ll be back with the EMG results in 2 days.

Have a nice day.

 

[Nikki J]

Wishing you the best. Waiting is very hard I know

 

[lgelb]

It is still more likely that the damage to his spinal cord is more extensive than originally thought, than that he has ALS. He might have a disk that was damaged and later ruptured, or a loose vertebral fragment that is putting pressure on the cord (nerves), or another kind of lesion. He might have damage in multiple levels of the spine that the CT did not pick up.

I would make sure that he has an experienced neurosurgeon and/or neuroradiologist read the MRI. If surgery is recommended, he should have a second opinion from a different neurologist/neurosurgeon at a different center.

 

[Sifmode]

Thanks for your response ,

From what i understand if its spinal cord damage and considering the symptoms he has we need to act really fast to prevent sequela , we are in Belgium so healthcare is free but you cant ask for too much , you have to go with the flow.
What concerns me is that he has zero pain which is possible albeit not very common is spinal damage.
I´ll try my best.

Appreciate your help

 

[lgelb]

Zero pain is possible in this scenario. I agree an MRI ASAP or even before that, someone else reading the CT that was already done, is a good idea.

Sometimes if another patient has to cancel, there is an unexpected appointment available; I don't know if cancellation lists for those very eager to be seen, like your dad, are kept in Belgium.

 

[Sifmode]

Hey,

The EMG was carried only in his right arm and i don t have access to the result but the neurologist didnt like what he saw and decided to hospitalized my father.
This morning while accompanying him to the hospital i realized that his left arm and right leg were weak as well which was confirmed by the neuro.
I asked the neuro if he suspected ALS and he said we need the MRI to be sure and that it was going too fast for MND , but i could see in his eyes he was really worried.
I guess there is going to be a battery of test this week at the hospital so we should know soon.
When i came back home thinking of the worst of course something just clicked in my head : My grandad died of some form of dementia at 84 (not alzheimer's) and looking online i realized there is a link between FTD and Familial ALS.
For the last 6 weeks i have had fasciculations in my right leg and for the last month in my left one , now for the last week small cramps and perceived weakness in the right one.I didnt think much of it.
I just read the sticky in this forum which point away from something sinister but still i guess i´ll have to ask the doctor to test my dad for genetic ALS.
Im getting ahead of myself and need to focus on my dad for now but if there is a small chance that this is familial ALS , i have to be proactive.
I can deal with my own stuff i dont have any kids and have never been afraid of death but if something happens to my sweet sister (Always been extremely close , she´s one year younger than me) and/or her two baby boys i would be inconsolable.

Thanks a lot and take care of your close ones.

Simon

 

[rmt]

You are really jumping ahead of yourself. It doesn't sound like the doctor thinks it is MND. There is no reason to jump to familial ALS and to start worrying about your sister and nephews. I'm sure everything that is happening with your father is very stressful. Try not to panic. Make sure to take care of yourself too.

Hopefully the testing will give you an answer quickly.

 

[Nikki J]

Dementia in one’s eighties is sadly common. IF your father has ALS ( which it doesn’t sound like they saw) you could ask about genetic testing but as rmt says you are getting ahead of yourself. Genetic FTD commonly strikes younger. I have a relative with it right now he is 57 and has been symptomatic for well over a year

 

[Sifmode]

Thank you for your quick responses.
Yes i know i need to calm down , i don t even recognize myself.
I guess now i know how it feels to really fear for the health of someone you love.
It s a nasty part of life but one we can´t avoid.
Sadly the neuro said AlS was clearly a strong possibility (rly dirty EMG and zero sensory problem) but was just progressing way too fast , so a big decompensation after a cervical problem is i guess the other option.
FTD tends to strike before 65 its true.

I really hope that one day we ll find a cure for that monster , it seems that gene therapy especially for familial ALS could be a game changer and could help families like yours Nikki ; plagued for generation.
I wish you all ALS sufferer a slow progression.

Have a nice one

 

[KimT]

Hi Simon,
I'm so sorry both you and your father are going through all this. I hope it isn't ALS but, if it is, you will find wonderful support here.
Positive thoughts for you both.
Kim

 

[Nikki J]

I have a lot of hope for genetic therapy for future generations of c9. We see it already for sod1 and fus. No cures yet but real treatments.

I am sorry to hear they think ALS likely but sounds like there is still hope

 

[Sifmode]

You are being very kind KimT , once again thanks to all of you.
The silver lining of all of this is i get to spend some quality and very real time with my dad , even thought it is a stressful time.
I will post an update when i'll get more information especially that MRI.

 

[Sifmode]

Hi everyone ,

We received the diagnosis today and what was obvious for me happened , it's ALS and it's a rapid progression.
My dad took the news well , he had the life he wanted , two kids that he is proud of and who loves him (my sis is coming tomorrow for a while).
He is not afraid of death and the fact that there is not much physical pain or cognitive problem involved reassure him a lot.
He saw his dad dying of dementia and his mom of cancer and it was no picnic.
He is going to enjoy it while its manageable and use assisted suicide when it will be too much , i want him to make it through summer so he can enjoy his family and grandkids for this summer and i think it's a real possibility but i have to be realistic , he will never make it to 2025.
I knew so i was prepared but i'm crushed anyway , i try to be strong for him cause i know it gives him great pain to see his kids suffer.
I talk to the neurologist in the hallway and he was kind enough to say he' ll examine me next week (even do an EMG) me concerning my symptoms which are getting worse.The cramps and fascics in my legs just wont stop and the feeling of weakness turned into muscle fatigue/soreness when i use them (after a bike ride or a set of stairs).
I can still do what i uses to but not as fast/much if it makes sense.
My family took a uppercut to the chin today but i think we can concentrate on the good and enjoy the time we have left with my dad but if something happens to me my mum and sis will just go insane.

Simon