Old 08-08-2018, 01:52 PM #1 (permalink)
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Question New-ish Diagnosis

Hi-
Iím new here and was diagnosed 4 months ago. My symptoms started a year earlier! Started with falls then foot drop. Also cramps and fasiculations. It was terrible at first but Iím adjusting now. My ALS clinic is great and the local ALS Association couldnít be more helpful. Iím on Riluzole and mexiletine also bipap at night. Use a walker and have an AFO. I look forward to to learning from all of the great people here! Itís a journey.
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Old 08-08-2018, 02:54 PM #2 (permalink)
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Default Re: New-ish Diagnosis

Sorry to have to welcome you to this exclusive club, but you will find heaps of support and help here.
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Old 08-08-2018, 03:49 PM #3 (permalink)
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Default Re: New-ish Diagnosis

Sorry to welcome you here. This is a great place for help and support.

How are you doing with the Mexiletine? My doc suggested it to me, but I decided against it.
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Old 08-08-2018, 04:01 PM #4 (permalink)
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I too am sorry to have to welcome you here. Rest assured you are joining a great group of folks that have been amazingly helpful to me!

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Old 08-08-2018, 04:37 PM #5 (permalink)
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Welcome. Feel free to ask any question. The combined knowledge of people here is amazing.
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Old 08-08-2018, 05:01 PM #6 (permalink)
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Default Re: New-ish Diagnosis

Thanks everyone! And, Karen- I think the Mexelitine is helping. I feel better anyway. Just learned to take it on a full stomach. Otherwise I felt some discomfort. No cramping and far fewer twitches.
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Old 08-08-2018, 05:09 PM #7 (permalink)
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Thanks all! Karen- I have no cramps and almost no fasiculations since starting it.
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Old 08-08-2018, 05:41 PM #8 (permalink)
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Default Re: New-ish Diagnosis

I'm sorry to hear about your diagnosis, but happy to welcome you here. Thanks for sharing about mexiletine. I get terrible cramps, I do take baclofen and gabapentin and they help some, but not enough. My doctor suggested mexilitine but I've been on the fence since it has more serious potential side effects. Encouraging to hear how well you are doing on it!
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Old 08-08-2018, 05:52 PM #9 (permalink)
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Default Re: New-ish Diagnosis

Welcome. I look forward to getting to know you.

Re fasciculations since you also take riluzole which is known to reduce them in some people was the mexilitine timing such that you are completely sure it is mexilitine? Mine stopped a couple of weeks after starting riluzole and I have never had mexilitine

My sister took mexilitine though for several years and tolerated it well. She took it off label when it was in trial possibly to slow progression ( it failed but they found out about the cramp benefit). I don’t know if she noticed any cramp or fasciculation effect. We never discussed it
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Old 08-08-2018, 07:14 PM #10 (permalink)
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Welcome, DL. Glad to hear you have good support.

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Old 08-08-2018, 07:43 PM #11 (permalink)
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Welcome! So very sorry that you have a need to be here. There are so many wonderful, helpful folks here for you!

Is mexilitine for cramps? I haven't heard of this medication.

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Old 08-08-2018, 11:25 PM #12 (permalink)
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I took Riluzole for a month before I started the mexilitine and the lessening of cramps and twitching was gradual. It could be that or the riluzole or the bipap or a coincidence. Not sure. Theyíve been watching my liver functions closely and so far so good.

Thank you everyone for the greetings and support!
Mary
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Old 08-09-2018, 05:41 AM #13 (permalink)
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Cathy mexilitine is a cardiac medication. There was a trial to see if it could slow progression which it didn’t but participants reported a great reduction incramps so they did another trial for that. It does work well for refractory cramps for a lot of people. If you can’t control your cramps with over the counter measures it is worth asking about.
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