Pls or Als?

[Artista]

I'm new here and just got the devastating news that my dad may have pls. He had brain and cervical spine mris, nerve conduction test, and emg. Neurologist is guessing pls as nothing else makes sense. He's referring my dad to another neurologist at uc irvine, dr. Mozzafar who has the equipment to do further testing.

Background: In jan 2017 dad felt his left leg weaken and had his first fall. He had a couple more from feeling dizzy and losing his balance. By summer he had left leg weakness. Then a couple months or so later his left arm got weak and worsened until now where it's spastic and he can't raise his heavy feeling arm above i think his head or lower.

He went to a neurologist who did a brain mri. It was clear so stroke and brain based issues was ruled out. He gave dad rx for PT. He started to make small improvements week on week. Then in feb of this year he lost his balance and fell hard hitting his back and head against the stove. He couldn't get up for 1/2 hour from pain. Finally crawled to the phone and called my bro.

We put him in assisted living for 3 weeks as he got a littke better mobility and could shower himself with the bars and chair.

Got his shower set up and temperpedic bed since he can't rise well if he lies flat. At first he couldn't even lie down. More scans and no fracture of vertebra.

Started PT again with a great therapist 2 x week since end of march. Bro reports he sees a little improvement each week. Hes there fri through mon to help so 4 days he doesn't see him.

My question is, i understand there are different types of motor neuron disease. All of them says progressive. I have dug around and can't find if one can make small improvements for a few months of PT and still have mnd. Does it go up and down, progress, gets a little better week on week, progress, etc or with all of them it's only decline. His walking has improved a little. He's able to bathe himself now with the chair and grab bars. Of course his right arm and leg are pretty good, minor weakness in them too.

Anyone have any insight? He was worse after each fall he had, not just the bad feb one, and is active in PT and doing some work in the gym on sats.

Appreciate any and all info and experiences.

Tia and much love to you all. ❤

 

[Nikki J]

Hi
I put this in the Do I have ALS subforum as it seems the diagnosis is very wishywashy.

This must be very difficult for all of you. It is great that you have been referred on. I looked up that doctor and he has a neuromuscular specialty so hopefully he will be able to give you more solid information.

You are right that both PLS and ALS are progressive. It is not beyond the realm of possibility though that someone might be slightly better functionally or symptomatically with things learned at PT. I have had slight functional improvements when doing something differently but I did not actually improve I hope that makes sense?

There are a lot of neurological diseases and odd symptom complexes. I hope this new doctor can figure this out

Good luck. Please keep us updated on the follow up

 

[Artista]

Thank you Nikki.

I didn't sleep at all last night. I called his PT place and left a message for his PT to call me. I want to see if she sees muscular improvement or is it learning to function better. I'll post here once she calls me.

It's shocking because his doc is always impressed with how for his age, bp, cholesterol, weight are all good. He has nothing else going on with him. Was playing tennis until his first dizziness that made him lose footing in his left leg and fall.

Thank you so much for responding and allowing me to talk to people in the know. I truly appreciate it. I went through breast cancer and learned more from breastcancer.org forums than my docs. Nothing like experiences when trying to help newbies.

I'll update when I see what PT has seen with my dad these past 2 months. Much ❤

 

[Artista]

I just spoke to his PT. The affected muscles aren't getting better. She sees him improving in his overall function. PT is very nice and works with him mentally too. Says he's a hard worker but I'm not sure he will remain that way as he read what pls is last night, progressive, no cure, no treatment. I know he's in shock as well and brother is convinced it's not pls because it got worse with falls. Now I read here it does.

Any words of wisdom to cope for him I should reinforce and for us family? It's not a firm diagnosis but as things have become ruled out, it seems at least he will remain the way he is with no muscle improvement, activity, being noted.

My bro, dad and I are naturally high anxieties and suffer from bad depression basically all our lives. They manage without meds. I'm on disability from it. Right now I don't care about myself and 24/7 my thoughts are with him and figuring out ways to be supportive from 500 miles away.

Thanks for advice. I know no firm diagnosis but no muscle reaction at 79 with treatable stuff seemingly ruled out is tough.

I'll use this thread to update and vent so please don't lock it. If anyone responds I so appreciate it but I have only 1 friend who's dealing with a mother with altzheimers and is in bad shape herself. If I can have this one thread to help me and my dad, it'd be greatly appreciated. If it's confirmed no pls/als then I'll hopefully find the forum for it.

Thank you. I've read many posts here and the kindness and help you all provide while dealing with your own issues is simply inspring and amazing.

 

[Artista]

Brother gave better details on function and the visit with the neuro. I guess if he gets worse in function or something else happens then I'll insist on seeing a neuromuscular doc.

Thanks for reading.

Bro:

"I honestly don't think there's any point in getting any more diagnosis. There's no type of surgery that could improve it no matter what it is. But that's not up to me. I know Dad wants to know. Yes he's compensating with other muscles, but again, his left leg moves better than a month ago. I see it when he walks and especially when he walks upstairs. His left arm he can lift higher than a month ago. This has nothing to do with right side compensating. I'm not saying he's making a strong recovery. His arm strength is still not better, but movement is, and left leg is definitely stronger than before. PT doesn't see him do stairs, put on clothes, get in and out of car. Whatever he has is nerve damage, but what Zardous could not answer is why it got worse after his fall in February. I asked him and he had no answer. A fall has nothing to do with PLS. That's why I think the fall screwed up nerves that had been damaged by his previous falls. And the original falls began when changes were made to his prostate medications which made him dizzy.

When I told Zardous this he looked puzzled. He doesn't know, simple as that. I hate it that he suggested PLS because he has no other theory to pull out of the doctor's book of knowledge. He even said Dad"s case is different than what he has seen. Dad's case is unique. Zardous has no answer and I doubt the other doctor will either.

Yes, there is nerve damage. There's nothing any doctors can do. So, it's time to focus on the positive, keep pushing him to improve, forget what if it gets worse, and just say it's going to get better. If in the future something else says otherwise, then we face it at that point in time. For now, I see improvement in left mobility. PT is right about muscle strength not being good. But she doesn't see him in daily activities like I do... if he hadn't been improving at all, I would be extremely worried about this. I watch him like a hawk with left leg and left arm. As a matter of fact, I saw him with his right leg up and his left leg keeping him steady without holding onto a cane or anything...

If I see things getting worse, I promise to tell you. The fall screwed up the nerves that were already damaged. But Zardous is a cocky guy, he won't say that he has no idea what it could be, because it's a unique case... thanks for listening to my rant, but it's because I hate the arrogance of doctors. He should have said I have no conclusive evidence so you should do further testing. But no, he had to make a suggestion which he backtracked when I said it got worse after he fell, then he said I don't know what it is, I could be wrong. Now I have to deal with Dad being bummed out now when he was actually in good spirits before as he saw improvement in movement overall. I'm pissed. I really don't want to see Zardous again. He has no answer... Dad called to make appointment with the other doctor. They said someone will call him.

I'm done with negative thoughts on this... I'm going to look into alternative medicine like acupuncture. See what the Asian philosophy is on dealing with nerve damage.

 

[lgelb]

Artista,

While I'll agree with your bro that a second opinion from another neuro is warranted, and UCI or another academic center sounds like a great place to get it, I'd hold off on things like acupuncture, that can be harmful in the wrong hands, until that second opinion is obtained.

It is simply not true that there is no treatment whenever nerves are damaged, especially if due to a systemic disease or a spine problem; both are generally amenable to treatment at least to the extent that improvement is possible.

And even PT works better when the therapist has a diagnosis to go on...

Best,
Laurie

 

[Artista]

Thank you Laurie. I'm for second opinion, bro is lets see if it gets worse then we will. I'm leary about acupuncture but they both are determined to try. I can't stop him. But I will pass on this message to them so thanks so much for reading and replying . ❤