Diagnosed with "Atypical slow progression"

PeterKh

New member
Joined
Dec 13, 2024
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Loved one DX
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Country
SK
Hello everyone,

My father-in-law (63) was diagnosed with ALS this February. But the doctors said it has quite atypical progress and it's very slow. Symptoms started about 6 years ago.

Little overview about his condition and symptoms:

- Muscle twitching and weakness on both legs and arms (for 6 years now).
- No muscle twitching on neck or head area.
- No swallowing issues.
- No speech issues.
- He has muscle pain when there is a sudden barometric pressure change outside.
- Visible weight loss, he lost approx. 10 kg (22 lb) of weight this year.
- There's some visible muscle atrophy.
- He had serious body inflammation during this summer that was cured with antibiotics. It's good now but since that time he has shortness of breath.
- He was also diagnosed positive to borreliosis about 3 years ago.
- He is still 100% mobile. No movement issues except sometimes he has stiff tendons on fingers, but the rehab helps him.

He went to see a neurologist yesterday for a regular check and he told him that he is in a very good condition considering the ALS diagnosis.

Honestly. At first I thought it is a misdiagnosis but I don't want to question medical authorities.

My question is, does anyone has the experience of similar slow progress or symptoms like this?

Thank you in advance.
 
Hello and welcome to the forums. Sorry for the reasons you find yourself here, but hoping you find it helpful and a place of great support.

Is your father in law being seen at an ALS centre? Has the diagnosing doctor provided clear explanation of why the diagnosis was made? It is possible for people to have comorbid conditions. Testing positive for borreliosis does not exclude a diagnosis of ALS, but may confuse the issue with additional symptoms.

Here's a link to information about second opinions (Second Opinions, First Clinic Visits). It is appropriate to seek one, especially if there is some confusion about the initial diagnosis.
 
Ditto to what shiftkicker said. If he has 2 agreeing neuromuscular opinions then it seems a solid diagnosis

We do have some slow progressing pals here. I am one- not in quite as good shape as you describe but still walking and no bulbar or respiratory symptoms approaching 11 years since onset. I am also highly atypical
 
Slow progression, unless something happens… a bad fall, some other sickness
should happen along the way. My progression was slow until I was hospitalized.
I woke up one morning with a headache so bad I was nearly passing out if I
tried to get up. My wife called 911 and they took me to the hospital.
I was admitted immediately neuro ICU.

Trying to keep the long six days there short.. I was put on intravenous morphine
every three hours as the brain scans and MRI procedures were reviewed which
took two days. They decided I had two options. They would put two shots
in the back of my head, if that didn’t work there was a surgical procedure.
The surgical procedure would require a trach, because of ALS I would have
to stay on it after. (When they say this maybe uncomfortable it really means
you’ll remember it for a long time)

Fortunately the two shots worked which will have to be done again in the
future if it returns again.

I was in a bed I could not get out of for six days or an alarm would go off.
What strength I did have in my legs is nearly lost now. It’s not coming back.

Wrote all this to say this… if you are slow progression be careful (falls)
and pray you don’t get seriously sick with something else,
 
Thank you all for your replies guys, I appreciate it!

Unfortunately we don't have ALS centre here in Slovakia. I should check surrounding countries.

He was diagnosed in neurological clinic. He went through some tests, which showed brain lesions. At first they ruled out ALS, then they confirmed it's ALS and told him to come back in one year for check-up. I'm not an expert but I think one year is quite a long time for a meeting with the patient again. Basically they didn't tell him much.

So we found another neurologist specialized for neuromuscular diseases in September this year. He checked the examination from the clinic, he checked his condition visually and gave a statement that it is "possible ALS with slow progression". Now he checked my father-in-law again 2 days ago and said that he is in good condition. The next meeting is scheduled for April 2025.
 
I would want to rule out MS and other autoimmune diseases. Progressive MS can present like ALS. Whatever it is, I'm glad it's slow.
 
My pALS has slow progression ALS (or maybe PMA, his neurologist said it could be either). His limb onset symptoms started 8 years ago. Since then, he's completely lost the use of his right arm and hand, most of his left arm and hand, and his legs are pretty wobbly now, too, though no bulbar symptoms yet.
While I'm so grateful the progression is slow, every neurologist we saw along the way to his diagnosis said, "Wait until you get to the ALS clinic; they'll get you on clinical trials, etc.." When we finally got the appointment at the clinic we were told that no clinical trial would have my pALS because it's slow progression and they want fast results. So we are forced to wait for expanded access programs (EAP), try various supplements, and generally do our best to avoid falls and illness (Clearwater AL is right on the money with progression speeding up when it happens) until a drug or therapy makes it past FDA approvals. It's frustrating but we're doing our best to stay hopeful.
 
Hi. I have very similar symptoms. I got diagnosed September 27 of 2023. I went thru multiple tests and had 34 vials of blood drawn in July of the same year. It took about 4 months to go thru multiple tests. In March of 2021, I fell for the first time. No reason could be figured out and I just let it go because it couldn’t be explained and nothing happened for about 5 months after that. I was suffering from a bad knee at the time as well. Suddenly in August while I was in Physical Therapy twice a week for my knee, I woke up one morning and my toes felt really strange and when I put on socks it felt so cumbersome and weird, I stopped wearing socks after a time. I proceeded to fall 8 times in 6 months. When I say fall, it was full blown fall on my face. Luckily I still know how to roll when a fall occurs and had no injuries. I got a cane in Feb of 2022. I am 60 years old and a vet. I have not fallen in over two years. I was sent to GW University for their ALS clinic. There I was diagnosed and put on ALS meds. Fast track to the current. Still have issues with the left foot. Toes are almost paralyzed they are so weak. I truly believe these meds have done something because some of my issues have improved. Here are my symptoms:

Weakness in both legs. More so the left foot. Drop foot when I do too much. Atrophy in both calf muscles.

Balance is off. It is better than when I got diagnosed though.

I will get bad cramps if I don’t take care of myself the way I should. This is daily. Neurologist told me to drink power aid and it helps 100%. I drink daily, but if I’m out doing things and don’t have any it’s a bad day until I get some. Pickle juice helps as well.

Bladder issues. When I gotta go I get about 5 minutes to find a place or I’m in trouble

Fatigue is my main issue. I get overly tired just walking 50 feet.

Here are some things I can still do.


I can walk without the cane. I do so just in my house. Too risky.

I have an electric wheelchair provided by the VA. I use this in my house as well, due to fatigue.

I can drive

I eat anything and everything because they want my weight to stay consistent.

I can fish as long as I have a seat. I usually fish in a large raft. The main issue is walking down the ramp or up when we are done. Once I’m in the boat all is good.

No issues with my upper body. I get really achy and stiff when cold or damp weather systems roll in. Still strong though

No issues with talking, chewing, or eating/drinking.

So right now I call myself one of the lucky unlucky ones. I just take every day on, knowing it’s going to be a challenge, but am so grateful that I’m still here and can still fish and walk the dogs with help of course. Wish I could golf but the momentum from swinging the club would make me fall over unfortunately. Just try and stay positive. Good mental health is very much needed when dealing with this terminal illness. I hope this gives you some motivation. Your post did for me.

Mike
 
Hi Peter,

It seems very similar with me as with your father. My symptoms started over 6 years ago, mainly in form from 24/7 fasciculations in both my calves/ legs and some relatively mild atrophies. I have got two thorough neurological examinations, included EMG, both confirmed the diagnosis. Perhaps my relatively young age, 53, and a very healthy lifestyle have helped the slow progression but then there are others younger than me where this is not the case. It has been feeling very unreal, having this grave diagnosis for so long but still being almost fully functional.
 
HI, I am going on 14 years with als and am still walking, driving and so on. I do have weakness in my legs and arms my right arm is starting to get to the point where it is not working very good, my left is weak but ok. Walking distances is a no, I have a wheelchair for that, but am still breathing good. My appetite has diminished. Life is tough when you have als. My best to you're dad.
 
I have had ALS for 24 years now. Have had a slow progressing form. It was called Upper Motor Nearon ALS. I hope had my degeneration concentrated in the back of my brain in my neck area. It was not down my spinal cord so typical with ALS. Now it is going down my spine as am losing innervation to tongue and chest.
 
I was diagnosed in August 2022. While I have muscle lose over my body, I still walk unsteadily (carelfully, using hand holds aroud the house and either a cane or a wheelchair for longer exercursions. My version is respitory ( years of smoking/empazema not helping) ALS I use a bipap all night and typically one hour during the day. Otherwise I am on a oxygyen machine during the day which at least feels good. During my next visit at VA I will ask abour having a portable oxy canister when going out. I regularly take Lorazepam for "panic attacks) which works well.
I stopped driving over a year ago, but asked my wife if she could find a parking lot I could drive around a bit. Of course it felt good and I drove us all way 25 miles home. My driving is normal. Exhilarating!! Small victories! But I would not drive on my own except in an emergency.

All my thoughts and prayers to my fellow travelers, those with the disease and those who care for us; Thank you!
Happy New Year!

John
 
@John445 Why are you using supplemental oxygen? In some rare cases, oxygen is bled into BiPap, but if you are on BiPap, using 02 by itself can build up carbon dioxide in your blood. Oxygen is contraindicated in most ALS cases.
 
I agree with Kim, did your neurologist prescribe oxygen? I had an issue with low oxygen saturation last year. My PFT's were always normal so it was a mystery as to why my saturation levels were reading low. My pulmonologist wanted to give me supplemental oxygen but my neurologist said absolutely not, it would possibly build up the carbon dioxide levels. He advised using the bipap more. The oxygen saturation issue has since subsided and now have normal readings.
 
Hi Mike, can I ask what you do for exercise To maintain any strength you have?
Eliza
 
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