PLS I'm on a new drug for me that seems to be working.

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Eydie67

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My Doctor at TX Neurology suggested I try a drug called Carbidopa-Levodopa25-100 tabs. This drug is used for Parkinson's but they have found it's working on PLS. I've taken Bacoflin for years. It's not always effective for me, but the Carbidopa has almost completely stopped the spasms in my legs. It's been a blessing I started taking it in Oct after living with PLS for about 11 years. I take pills a day and it works. If you are like me I'll try almost anything to improve my situation.
 

ShiftKicker

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I took a trial of Sinemet last year. I didn't notice any super big changes, but my neuro, my gp and the people who know me all commented on increased fluidity of movement for me. I noticed I could walk for longer distances as well. However, it was apparently not enough to provide compelling evidence it was helping me and it was recommended I stop taking it by my neurologist.

My gp is willing to continue prescribing it, but I'm not really sure if I want to go against the wishes of my neuro quite yet.

Thank you so much for reporting this. When it was prescribed to me, I couldn't find anyone else online with UMN issues who'd recently tried it and received positive response.
 

lgelb

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For those interested in the dosage regimen used (starting low and going up) and contraindications, here is the Phase I trial page.
 

Eydie67

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For those interested in the dosage regimen used (starting low and going up) and contraindications, here is the Phase I trial page.
I started at a fairly high dose 3 pills a day, it worked almost immediately. I did experience some nausea at first but if I eat a cracker I'm fine.
 

ShiftKicker

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Thanks for the study link, Laurie. I was under the impression a positive response to Sinemet meant something other than MND. In conversations with a few folk who'd trialed it and who had PLS or HSP, it was being used as a way to eliminate MND as a diagnosis.

Eydie, I am so glad you've found something with such a profound positive effect. I hope you find continued benefit and improved function for many years to come. I gather that taking the drug too close to eating something with protein in it can increase nausea/headaches.
 
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