Tentatively diagnosed with PLS

JCK36

New member
Joined
Dec 18, 2024
Messages
2
Reason
DX UMND/PLS
Diagnosis
12/2024
Country
US
State
OR
City
Albany
Hi all,

I'm a 45 year old mom to two small kids. I am scared and need advice on how to slow this down.

Back in the early spring my left hand suddenly became weak, slow, and clumsy. Around the same time, my left foot started to drag occasionally when I walked. By the summer, I was having some fasciculations all over my body (mostly at night) and my upper left leg would stiffen up when I tried to run or walk fast. It was worse when I was stressed or cold. My left hand weakness stayed the same, but my left arm got a little weaker and jerkier, and my balance was off.

A recent exam showed hyperreflexia, positive hoffman, and positive babinksi signs. I believe it was on both sides, but definitely worse on the left. I also have clonus in the left ankle. But my EMG was normal, as was the MRI of my brain and cervical spine. Blood tests normal. They didn't think it was necessary to do a lumbar puncture.

So they said it looked like PLS. I know it could convert to ALS. I'm scared. I need to at least stay healthy until my kids are grown. Any advice on diet, exercise, medicine is welcome. I'm going to get a 2nd opinion.

Thank you,

JCK
 
I have a friend with PLS. She had an EMG every year for four years and she is still PLS. She uses a scooter to conserve energy and to keep up with her family on outings.

If you're a healthy weight, stay at that weight. I'd eat good fat and clean protein. If you have access to a warm pool, it has helped lots of people with spasticity. It's well worth a membership somewhere that has one. Magnesium (oral and topical oil) are both good for you.

Also, I would get a second opinion because there may be other things on the table.

Just try to enjoy the holidays and post any questions you might have.
 
Welcome to the forums, JCK. Sorry you find yourself here, but very happy you've found us.

If you haven't seen it yet, the Resources section is a good jumping off point. It contains a link about second opinions and clinic visits. Are you being seen at an ALS clinic? That link has some great advice about what to expect and provides some guidance on questions to ask, etc.

Please feel free to ask any questions and we'll do our best to help you out.

Take care
 
It is important to keep active but you should be aware of your energy levels. Prioritize the important things. It is also vital to avoid injuries and especially falls. Not only are they miserable but it can be hard to heal and it seems they can accelerate progression

Definitely get that second opinion and if at all possible geographically get followed in an ALS clinic where they can monitor you
 
Thank you to everyone who responded.

I'm taking magnesium and looking into other supplements. I'm in pretty good shape overall, until this happened, but I am going to clean up my diet and have started exercising again.
I'm trying to get into an ALS clinic for my 2nd opinion.
 
If you can find a physio to work with who is educated on neuro and MND conditions, I highly recommend. The MND clinic should have a few people to recommend, hopefully. There are many things that you can do to keep as limber as possible- and it's also helpful for mood, circulation, cardiovascular health and general well being.

I've had great benefit from physio- balance and proprioceptive work, getting up from falls safely, adjusting posture, gait assessments, etc. Having an upper motor condition like PLS can definitely affect how you approach fitness and it's really important to learn safe stretching, strengthening (if possible) and working within physical limits. You can definitely exercise, but having some expert guidance is important. I found it disheartening the first little while because of the adjustment from going all out for fitness to being more conservative in approach. Having a physio there to keep me in check and describe benefit and harm, track changes and be a bit of a cheerleader helped me keep going.

Take care
 
Hi Cathy,
I'm sorry to hear about your possible diagnosis and of course understand your concerns.
You're asking the million dollar question about what would stop PLS from progressing to ALS.
Unfortunately, there is no answer.

Fasciculations are a nonspecific finding.
I agree that it's important to get a second opinion for an ALS clinic.
Your presentation of left sided problems (arms and legs) versus lower extremities alone is a bit unusual.

As other have said, maintaining activity is important.
The recommendation made by others are helpful
Stretching can help with stiffness.
Medications, such as baclofen can help for symptomatic relief
I've been taking riluzole, since I was diagnosed with PLS in 2001. I have a strong family history of ALS.
I get emg's every other year or more frequently if any concerns arise.

Good Luck!
 
Hi JCK
I wanted to share my 18 years of dealing with PLS. I understand your frame of mind because i went through the same. I was luck enough to go through a week of testing at Mayo Clinic. Bottom line, regarding PLS, is that everyone progresses differently and at different time frame. Also, what works for one person, may not work for another.

I tried oral Baclofen but had negative side effects. I opted to have a Baclofen pump implant, which turned out to be the most positive medical procedure/medicine for me.
I also take 30mg of CBD (capsule) which relaxes my muscles. I'm basing the benefits of the CBD on the improvement heard in the clarity of my voice.

Obviously you want to find the best Neurologist who is familiar with PLS. Your best luck is finding a doctor specializing in ALS. Then let him do his job while you become proactive on controlling your symptoms.

That being said, I'll share what works for me. I'm 76 years old. I still drive a car, I walk with the assistance of a quad cane, and I keep a fold down scooper in my car for situations that require me to travel long distances.i was told by my doctor to go forward realizing that PLS doesn't effect brain thought process or most other functions. It also doesn't effect your muscles to maintain strength. PLS effects the communication between the brain and the muscles.

I tried a gym membership to maintain muscle mass. That didn't work for me because it was to easy to make excuses to not go. Therefore, I bought a used treadmill, and a used recumbent bike. I worked my way 20 minutes on the treadmill at 0.8mph, while holding on with one hand. The recumbent bike is used daily at level 5 for 15 minutes. I do both daily with a "no excuse" policy. I've used this strategy for over 10 years to keep me vertical and mobile. I believe I'm doing everything practically possible to maintain my mobility and independence.

Most PLS stories I've listen to identify a n initial surge of symptoms, as I did. Then it tends to plateau and progress slowly. My goal was to try to stay ahead of the progression, or at least keep pace with the symptoms.

Please continue to ask question of those who walked your path.
 
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