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Active member
Oct 11, 2007
Learn about ALS
New Jersey
I have not posted in a while. I am in the re-check every 3 months turnstile with the neuromuscular doctor. Living with the cramping legs, twithching toes and swallowing issues for now but at least getting some sleep and food. Got a call that my Methylmalonic acid level was and is high so I started getting B-12 shots. It was also suggested that I take Co Q 10 supplements and vitamin E which I do. Something called neurontin was also prescribed, anyone familiar?Trying it all and hoping for the best. Have my next 3 month check next week, wish me luck.
Neurontin is a neuropathic painkiller - if you are having nerve pain, it will help. I have been on it for a year now.
It will most likely slow or stop your twitching as well.
Side effects - mine and exhaustion and weight gain but worth it to get some relief from the pain.
Good luck.

Thanks for the info, I did a search today on this site and it seems that quite a few people had problems with it. I had been taking small doses of klonopin but only to help with sleep. Leg cramps are pretty constant now, mostly in calves but up to thighs at times. The B-12 hasn't changed that.

Was wondering what dosage of Neurontin you are taking? My husband is taking up to 2000-2400 mg a night. He is resistant to take the high dosage because he feels so groggy and is worrying about getting out of bed at night. He also takes injections of b-12 three times a week. My husbands cramps have definitely slowed down, however he has constant leg and joint pain..especially at night. Even with sleeping pills and neurontin he wakes at night. Does the klonopin help with sleep? Oh, he also takes the Q10..the list goes on with other antibiotics and supplements. Always interesting to compare notes. Must be relieved to get some sleep. Take care! Kelly
Hi Kelly, I started with one 300 mg/day for a week then 1200 mg/day in 4 doses of 300 mg. they told me I could take up to 3600 mg per day but I do not because of the side effects even at lower doses. The klonopin is the only thing that helped me sleep. I don't sleep continuous, but 2 1/2 or 3 hour stints which is way better than before. Klonopin is a benzodiazapam like valium so you have to be careful about mixing with other drugs. I too have bad cramping, all in the calves and legs along with serious pain in the lumbar/sacral spine. I get the B-12 injection every two weeks so far. I have noticed less twithching while taking the klonopin.
My husband sleeps is about the same 2-3 hour shifts. I was wondering if you had leg cramps before diagnosis? My husband was always prone to cramping...was real severe when early symptoms occured. His first symptom was slurred speech. I will have to ask the Doctor about a more serious pain killer for the evening. I am glad that your twitching has slowed down. I administer the b-12 injections to my husband 3 times a week. He use to do it in his stomach when he was able. I hope that the B-12 helps you...we have to try everything. Have a great day.
Hi billyd. Have you tried Quinine? I take 300mg as do a lot of people here. With Baclofen twice a day I've been cramp free for about 2-3 years.
Thanks Al, I haven't tried the quinine but my gp suggested it. The neuro told me that if the neurontin did not work I could try the beclofen. Any side effects to that? Kelly, just for the record I have not been diagnosed yet, still in the wait and see mode with a 7 month symptom period and original diagnosis of cramp fasiculation syndrome from Penn clinic. My symptoms started with tired legs, then cramps especially calves, twitching mostly toes. Also had diminished rather then brisk reflex's and none in the feet. Some throat and swallowing issues since December and a whole lot of anxiety.
About the only one I've noticed is if I burp within about 10 minutes of taking the Quinine and some powder comes back up it sure tastes awful. Another good thing about Quinine is that you shouldn't get Malaria.
Al, I live near the coast just inland where we consider the mosquito our state bird.
Al, how much baclofen do you take?
1X 10mg morning and night Baclofen.
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