Diagnosed with PLS at 28, any advice?

[oktk1]

Hi everyone,

I'm 28 years old and was diagnosed yesterday with PLS as the doctor said there's no LMN damage found in any tests. Baclofen is prescribed and now I'm in a wait-and-watch phase, going to the hospital every 1-2 months to check my muscle and strength. I'm in Tokyo by the way.

My symptoms started at the end of 2023, almost 1.5 years ago. I found that my left hand could not hold the frying pan like I used to when cooking. I can hold the pan for a short time, then wrist drop (pan isn't dropped, still held by hand). After more than half a year, I started to have weird feeling in my left leg, it is not typical weakness or stiffness, I just can't describe it accurately. I also noticed that sometimes I have no strength in my left thumb and index finger, can't even open the drawer with these 2 fingers, but then I regain the strength and can do that. I sometimes feel muscle twitch for a short period of time since several months ago.

I went to a hospital and hyperreflexes were found in all limbs, clonus in both ankles and left hand, Hoffman's sign in both hands but it is not obvious in the right. In general, my left side is more severe than my right side. Did EMG and NCV and no LMN involvement was found. The CT scan shows no muscle atrophy, but the doctor said the muscle of my left hand looks a little thinner than my right hand. The genetic tests is not completed, but so far no genes have been found (PLS genes and SOD1 are ruled out). I'm going to get a second opinion in next month.

Now I have weakness in the left hand (weak grip and pinch), but no functional loss. I feel the muscle is stiff if I stay still for a while. I feel neck pain almost everyday when I get up (this starts long time ago, before symptoms). My left hand will shake when I run, is it clonus? In February I had high fever and then tetany for the first time, I'm not sure if it is related to my UMN.

I went through threads and it seems that my case is uncommon, lots of people have PLS starting from legs.

Has anyone else been diagnosed at a much younger age or has similar symptoms? What's the life expectancy for this case and what can I do? If it is allowed here, may I ask for supplement recommendation?

Thank you,
oktk

 

[lgelb]

Welcome to the forums, while sorry about your diagnosis.

Like ALS, PLS can start in any limb or as bulbar onset, though the latter is more rare in PLS. It's always good to get a second opinion. Re neck pain on awakening, were you evaluated by a rheumatologist? I take it you have re-evaluated your mattress and pillow. Latex for both can be helpful.

I wouldn't consider supplements per se until you have a second opinion, but nutrition, hydration, staying limber and getting enough sleep are all keys to using what you have, in anything. As PLS progresses, you may need medication, PT, bodywork, massage, etc. to manage spasticity. If there is an opportunity for warm-water swimming (safely), that could be good.

In the past, the experts felt that PLS patients could have a normal life expectancy. More recently, the consensus has been that life expectancy is about 20 years on average. For someone as young as you, that is a big difference, so I will also note that the basis for PLS data is pretty small and obviously unstable, PLS sometimes converts to ALS, it's a moving target. And of course therapeutics are improving, so I wouldn't consider yourself to have a "sell by" date.

This page may help: ALS or PLS? | ALS Guidance

 

[oktk1]

Thank you for replying to my post! I haven't and I should talk to a rheumatologist in the near future. Is muscle pain common for PLS, even in the early stage? I hope my progression remains slow and new drugs become available someday.

 

[Susan12]

I'm sorry about the presumptive diagnosis. I was diagnosed with PLS in 2001 when I was 41. I've had a very slow course. Have you had brain and spinal mri's to look for multiple sclerosis or spinal compression?

 

[oktk1]

Hi Susan, yes I had brain and cervical spine MRI. The cervical spine MRI is normal, but the brain MRI shows the iron level is high in a small area of my right brain according to the doctor. I also did lumbar puncture which seems to be useful to rule out MS, though the doctor never mentioned MS to me.

 

[oktk1]

Hi, I got a second opinion in a different hospital and the diagnosis is somatization (I hope I find the correct translation), which is very different from PLS.

The doctor did clinical exam, checking reflex and muscle strength. I did another EMG+NCV (whole body this time, only 3 muscles were checked in my previous EMG) and it’s normal.

The doctor thinks I don’t have any disease but mental problem. Even though it’s the first time he met me, he described my personality correctly, which is highly sensitive personality according to him. He thought my symptoms are caused by anxiety and stress, and prescribed me paroxetine. He also mentioned that my symptoms are not severe from the perspective of somatization, some people with this issue can’t even walk or eat though their body are normal.

Any thoughts on this? I plan to take the paroxetine and hope it will work.