Old 04-20-2017, 02:32 PM #1 (permalink)
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Default Baclofen

First visit to Neurologist she did a strength exam and I failed, at the time I had a lot cramps so she prescribed Baclofen twice a day. Had to wait a month for the EMG. Started taking the Baclofen within 3 weeks I started to feel so weak. Next appointment with the EMG Test. After a week the doctor call me for a next day appointment. Emg result was very elevated and told me I had ALS, she send me with a ALS specialist doctor for a second opinion, got the appointment not sooner than 60 days so I can taking Baclofen twice a day, No cramps but I wanted to be only in bed because I felt so week and eating got so difficult my breathing was bad I though dead was coming. Finally I went for a second opinion visit, the first thing the doctor told me why are you taking Baclofen I explained for my cramps then he told me right now this I bad for you and told me to stop taking. He agreed I had ALS. My world came down bad. He prescribed another medicine for cramps and depression. My big surprise came after a month that I stop taking Baclofen My body started felling better I was able to eat normal, a my breathing improved so much. So Baclofen was killing me it relaxed all my muscles to much then I learned that people with ALS is suppose to take this medicine in the late stages. My experience with this medicine was scary but I know eventually I will take it. Wrote this so maybe it will help somebody taking it in the early stages. Not an expert just telling my bad experience.
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Old 04-20-2017, 02:43 PM #2 (permalink)
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Default Re: Baclofen

I am so glad you are feeling better

It is not so much that Baclofen is only for late stages. It helps spasticity which can be a huge problem early on for PALS who are upper motor neuron dominant. However, as you found relieving spasticity can come at a cost as spasticity can mask weakness- sometimes a little spasticity can help keep you upright.

It was a balancing act for my sister early on. the spasticity was a problem but if she took enough Baclofen to eliminate it she couldn't walk

It is great you got to the neuromuscular specialist as there are certainly better things for cramps. Thanks for sharing your experience!
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Old 04-20-2017, 02:45 PM #3 (permalink)
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Default Re: Baclofen

Baclofen does not work for everyone. It can cause too much weakness, or conversely, it can actually increase spasticity in some people.

I am so glad you had a doctor who was able to reassure you and who changed your prescription to something safer. You do not have to take Baclofen later in the game either- I think there's a misunderstanding there of some sort. There are a variety of other drugs you can take, depending on need. This forum is an excellent resource for finding out what helps other people. There is a huge well of knowledge here- sometimes more educated and informed than the doctors many here visit.
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Old 04-20-2017, 05:41 PM #4 (permalink)
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Default Re: Baclofen

Thank you. I guess it wasn't good for me, reduced my cramps but my muscles were so relaxed that I could not walk, could not eat much and my breathing was difficult My Neurologist is a specialist in ALS. He prescribed Mexiletine is in study and is working great for me control my cramps. I am glad I found this site it is excellent.
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