Newly Diagnosed with Probable PLS

[Johansolo]

I’m 52 years old and my symptoms began 2 years ago with stiffness in the ankles. I used to jog all the time and I just blew it off as getting older. About 5 months later, I began to have speech issues - tripping over words, and some mild slurring. My wife finally prodded me to get it checked out. My primary care doctor referred me to a neurologist where I went through a bunch of tests, MRI, EMG, and countless blood test. The neurologist ruled out everything but ALS. He referred me to an ALS specialist that ran some additional tests. He came back with PLS. Unfortunately it is not confirmed as it could turn into upper motor neuron dominant ALS, but I guess that is just the normal process. Since the first of this year, my speech has gotten worse, and the stiffness has moved up into my knees. Is there anyone on this forum who has gone through this whole process, and anyone who had their diagnosis changed to ALS after a period of time?

 

[KimT]

I've been in groups where people with PLS stayed PLS. They usually do an EMG periodically to make sure lower motor neurons are normal. Most specialists say anywhere from 3-4 years and they confirm PLS. If your EMG isn't showing any lower damage, that's a very good sign.

I knew one guy who had PLS for 10 years, then it changed to ALS. His changed to ALS in 2014 and is still living.

So, just follow up with your doctors as they see fit. Even with PLS it seems you are progressing slow.

I have a close friend with PLS and she's near the four year mark of symptoms. I can give you her contact information if you'd like to talk with her.

 

[Johansolo]

Thanks for the reply KimT. The specialist told me that they’d do follow up EMGs to measure progress. He said I had the classic PLS symptoms - begins in the legs, ascends, and I can’t squat down or do lunges, and hard to even get out of a chair. I’m hopeful that it stays PLS, but I know every case is different. Finding community with other going through this will be helpful as it is a new journey for me.

 

[Nikki J]

Hi and welcome. We have a handful of plsers though most are not here a lot. Partly because pls being slow progression tends to post less I think. We also have had converters thoughI can only think of one active member currently.

You are very welcome to hang out with us pals of course. Hoping you remain pls though

 

[KimT]

It might be a good idea, if you haven't already, to invest in a lift chair. Besides helping you stand, they are super comfortable. My friend, who has PLS, uses a small power wheelchair (portable...I have one, too) for when she is out and about with her kids. It saves her energy and she can keep up with people.

If you need any more info, reach out.

 

[AZnative72]

Hello there. I was born & raised in Phoenix, but I live in Australia now. I’m 50 years old. My symptoms began in 2017 when 3 fingers on my left hand swelled up. They recovered, but then my speech progressively got slower and less clear until 2020. Since then, me speech has been slow & slurred, but stable. I used to run 5k a day, but tripped over my toes over 2 years ago and had to stop running. I can still walk, but often use a walker or wheelchair to cover longer distances.

My primary neurologist suspected ALS. He gave me an EMG back in February; it showed slight denervation, but not enough for an ALS diagnosis. So he gave me a provisional diagnosis of Motor Neurone Disease but an inconclusive subtype.

i received a 2nd opinion in July. That neurologist gave me yet another EMG and it also showed slight denervation, but not enough for sure to be ALS. So he told me “if you have MND, it’s PLS… but it could be Hereditary Spastic Paraplegia instead.” He also mentioned I could have Primary Progressive Multiple Sclerosis- but it’s a long shot because my MRI revealed no lesions.

The good news is I still pass the strength tests every 3 months. Back in April- 2 weeks after my provisional diagnosis- I went into my backyard and recorded myself doing 14 proper push-ups in a row. I showed the video to my physical therapist, and he included it in his report to the neurologist. I can still do squats & lunges and am actually improving. I can now squat 90 degrees. I’ve been doing lunges since the beginning of this year. At first I had to lean against a wall or grasp a table to do them. A month ago, I was finally able to do them with a cane to help me balance. Now I am slowly learning how to do them hands-free. I can get about halfway down on my right leg and about a quarter of the way down on my left leg. My physiotherapist also gave me some balance exercises and they have helped to a degree. I have fewer trips & slips nowadays. But make no mistake- I have spasticity in my legs and it makes it difficult to walk. And my overall symptoms worsen if I’m tired or stressed out.

Please feel free to keep in touch and let me know how you’re doing. I’ll do the same.

kind regards,
Michael