Old 08-13-2009, 09:39 PM #16 (permalink)
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Jennifer,

It's good to hear from you! So, the doctor has finally decided you have PLS. At least now you have a tag to put on your illness. I am sorry, though, that they are calling it PLS.

Zaphoon
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Old 08-16-2009, 02:41 PM #17 (permalink)
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Hi All

It's been awhile since I've written. I went into the hospital on July 14 and had the pump put in that day. I haven't been home (to stay) since that day. The pump does take spasticiay away but the trade-off is muscle weakness. For that I'm doing intensive PT, first a week at the hospital and since then a month of rehab at the local nursing home.

One problem with the pump is the neuros need to adjust it almost weekly (for now at least) to get the optimal level of baclofen flowing to the spine. I've been battling weakness, balance issues, and some occasional temporary paralysis in my right foot when I want to move. I'm learning that this thing can affect all of us differently and that I am super-sensitive to the drug and adjustment will take time. BUT, time is what I have. I'm retired and have great insurance benefits. So, I'm re-learing how to walk on my own with lots of great professional help.

Overall, it's better than before and will only get better.

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Old 04-01-2010, 01:25 AM #18 (permalink)
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Default Re: PLS, Memory and Bachlofen

Does Baclofen help with cramps also, or just spascisity? And how are cramps different from spasms? My husband is on 40mg of Baclofen a day, but lately has been getting really intense cramps in his arms legs, neck and chest. They are so severe they bring tears to his eyes. I thought maybe he is getting to tolerant of the Baclofen, and maybe a pump would be more effective? Lori
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Old 04-02-2010, 01:10 PM #19 (permalink)
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Default Re: PLS, Memory and Bachlofen

Has he tried Quinine? It really helped me when my cramps were bad. It's 3oomg by prescription but GNC Stores sell a product called Leg Cramps that might help.

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Old 04-03-2010, 07:28 PM #20 (permalink)
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Default Re: PLS, Memory and Bachlofen

Lori, my understanding is that baclofen is for the spasms but doesn't help the cramps. As Al said, quinine is helpful for the cramps. I was purchasing seltzer with quinine but now purchase quinine pills or Leg Cramps (that's the brand name). You can also find it at a Natural store if you don't have GNC close by. Though last night and today Mike's legs were cramping so much the pills weren't helping all that much. He drinks about 1.5 gallons of water a day so we know its not dehydration!
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Old 04-04-2010, 02:02 AM #21 (permalink)
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Default Re: PLS, Memory and Bachlofen

Thanks Judie and AL. Quinine is no longer available in the USA, is it in Canada? I put a bar of soap in the bottom of our bed under the sheets, as recommended by a few people, and Les saw it and told me to get it out of the bed, but I hid it again, and his cramps have subsided. Anyone else try this? HUGS Lori
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Old 04-04-2010, 08:36 PM #22 (permalink)
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Default Re: PLS, Memory and Bachlofen

I have read the soap one many times. I think Ivory soap is the one I tried. Who knows maybe it would help. I just hate Cramps so much, willing try anything sometimes. Keep us posted of results. I think maybe you could get quinine from Canada? The internet may open up some possibilities for this solution. Hope cramps subside..
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