PLS 15 years progression needs your advice regarding what is working for you

[Mariep]

hello, I would like to know if a new treatment has allowed you to reduce paralysis, spasticity and walking a little easier.
I have been diagnosed or PLS pseudo bulbar 15 years ago. I live in France. I am today paralysed at 80 % and spasticity has become so high in the last few weeks that I can only walk a few meters now with great difficulty and my body is in lead, I must wake up from the sofa every 1h1/2 because of pain in my whole body, as I absolutely need to change of position. I feel now very depressed by this important change in my disease a dwould appreciate your help. I had important Improvements some years ago with antioxydants and also neurofeedback.

 

[Nikki J]

What are you currently taking for antispasmodics?

 

[KimT]

You might benefit with an adjustable bed or hospital bed. I had a neck injury in 2000 and getting an adjustable bed was a game changer. Same with lift chair (hi riser chair).

I have two PLS friends who have the pump with antispasmodic meds. I'm not sure if they do where you are.

Do you take magnesium and use magnesium oil/cream?

 

[ShiftKicker]

Hi there-

If there's been a sudden or at least a recent rapid change, you may wish to get checked by your doctor for general health. Things like bladder infections or a recent viral illness can cause an increase in spasticity and other PLS related symptoms.

Are you taking any medications for your symptoms at this time?

 

[Susan12]

I was diagnosed with PLS in 2001. My spasticity was controlled with oral baclofen. I've been on a baclofen pump since 2004, with good control of spasticity. Some people can't tolerate oral baclofen (too much fatigue), but may do well with the pump.
A test dose is given (into the spine). If there is a good response, you may be a good candidiate. It drastically improved my quality of life.

 

[Mariep]

Thank you very much for your replies I just found. I have been taking oral baclofene for years, 3 x 10 mg daily and have increased now the dosage to 4 x 10 mg. I feel tired with baclofene. Have some of you tried tizanidine and dantrolene instead of baclofene with better results ? I have an ajustable hospital bed. I have been taking CBD but I still wake up at night with pain. I take magnesium daily, It helps. I had a bad cold but It is ok now and spasticity remains high, I am afraid It is just the progression of my PLS. I know some PLSers are taking Keppra but I am not sure It can really help.

 

[ShiftKicker]

Hi Marie-

I am hoping your spasticity eventually reduces now that you've recovered, but illness (and injury or high stress) can definitely cause a sudden progression.

I found Baclofen made me very tired too. It also caused bulbar weakness for me, which the doctor at first attributed to progression, as well bladder issues and some hair thinning.

I did try Dantrolene, which completely eliminated muscle twitches (unexpected) but did nothing for spasticity/stiffness and actually ended up causing some neuropathy in my feet. However, everyone is different, so it may work for you.

I take Tizanidine currently. I can only take it at night, as it knocks me right out and I can get 6+ hours of sleep with no pain. I find tired muscles give me more trouble, so getting a good night's sleep with no night time muscle spasticity helps me during the day.

Is your pain muscle pain from cramping and spasticity? Or are you experiencing nerve pain? If nerve pain, something gabapentin may be of help. If you are able to see someone like a pain specialist, osteopath or physiatrist to assess posture, positioning and gait to see if manual adjustment or judiciously applied botox may help.