Unfortunately, ALS was confirmed

[Salomeaa]

good morning, I haven't written for a long time,
I wanted to ask at the beginning if I can move my thread to the section where there are people with a diagnosis - because I already have a diagnosis of G12.2

I was recently examined by a neurologist and compared to the last very thorough examination, unfortunately, there is a significant deterioration
- I can't do the finger-nose test in my right hand
- right hand falls, clawed hand (I can't straighten fingers 4 and 5, if someone straightens me, it's ok but they return to their previous state quickly)


significantly weakened muscular strength of 4 limbs, pyramidal paresis of 4 limbs
I have exaggerated / brisk reflexes in my hands
in the knee and ankle - clonus
I'll only raise my legs a few inches (heel-knee is not feasible for me)
I have already lost a total of 14 - 15 kg, everyone is persuading PEG..
I will not stand on my toes, heels, under no circumstances will I raise my hands up, I am writing using Tobii's Eye Tracker. I try to eat, I choke, but I do what I can. I have to use NIV day and night, I can sleep all day. Can any of you tell me honestly - is it really bad?

 

[lgelb]

Yes, I have changed your status so you can post in the other threads and I will move this thread there. Very sorry to hear of your progression.

The feeding tube is a a good idea since you are losing weight. Do you have a way to get other equipment you will need, such as a wheelchair and hospital bed? Is your family ready to help take care of you?

Are you having difficulty sleeping at night or is your reference to sleeping all day meaning that you are still tired when you wake up even after you sleep?

Best,
Laurie

 

[KimT]

I'm so sorry you're going through so much at once. It seems like the first order of business would be to get a feeding tube. Undernourishment will cause exhaustion and it's very hard to gain back weight if you have lost too much.

How long will it take to get the procedure?

In the meantime, find the things you can swallow safely. Some find pureed, high calorie meals work.

 

[Salomeaa]

Thank you for moving the thread! I have the opportunity to get a wheelchair, even an electric one, reimbursed by the Polish State. Thank you!
Yes, I'm still tired after waking up, maybe it's the malnutrition and hypoxia to blame - maybe I should use NIV more. Yes, unfortunately, it looks like it's time for a PEG.

 

[lgelb]

Many people use NIV night and day. Using it whenever not having it is uncomfortable, is a way to extend the length and quality of life. Also I would make sure the hospital where you will receive your PEG agrees that you may use your NIV during the procedure. It is now generally considered best to have the tube placed in radiology, not surgery, but I do not know how things are done in Poland.