Benign/cramp Fasciculation Syndrom Questions

[Leonard275]

About a week or two ago, I created a thread asking about muscle twitchings and asked if any other celiacs had them.  After taking a physical examination and an EMG, the neurologist said that "nothing scared him" with my results and was of the opinion that I had cramp fasciculation syndrome.  He also made it a point to say that celiac disease can cause a lot of harm to one's body.  Having dealt with almost everything that a celiac could go through, yes, I agree.  But (which I guess is a good thing because he wasn't too worried), he didn't give me a run down of what I might do to deal with this; he simply left.  The nurse told me that everything would be discussed at the follow-up in six weeks.

 

So I have a few questions.  First, has anyone else had the diagnosis of benign/cramp fasciculation syndrom with celiacs?  What did you all do to treat it?  Did it eventually go away?

 

Thank you for all your help.

[durrsakja]

I took magnesium supplements even though blood work did not show a deficiency. Cramps were gone in a month. Hope that helps.

[GFinDC]

I had some twitching.  After going gluten-free my gut would spasm for about 9 months afterwards.  It seems to me it is something that goes away with better nutrition and time.  It may take a few months though.

 

 

http://en.wikipedia.org/wiki/Benign_fasciculation_syndrome

Prognosis

The prognosis for those suffering from diagnosed Benign Fasciculation Syndrome is generally regarded as being good to excellent. The syndrome causes no known long-term physical damage. Patients may suffer elevated anxiety even after being diagnosed with the benign condition.^[3] Such patients are often directed towards professionals who can assist with reductions and understanding of stress/anxiety, or those who can prescribe medication to help keep anxiety under control.

Spontaneous remission has been known to occur, and in cases where anxiety is thought to be a major contributor, symptoms are typically lessened after the underlying anxiety is treated. In a study by the Mayo Clinic 121 individuals diagnosed with Benign Fasciculation Syndrome were assessed 2–32 years (~7 years average) after diagnosis.^[1][14] Of those patients there were no cases of BFS progressing to a more serious illness, and 50% of the patients reported significant improvement in their symptoms at the time of the follow-up. Only 4% of the patients reported symptoms being worse than those present at the time of their diagnosis.

 

[nvsmom]

Huh. I wouldn't be surprised if I have this as it seems to describe my muscle twitches some what.  I get twitches in some muscles, for no apparent reason, that last for half a minute to half an hour, and tend to disappear when I use the muscle.  My most obvious one (to me) is in my lower eyelid of my right eye. I can see it jump and twitch like to picture shown in wikipedia. I have a few other spots where you can watch the muscles jump beneath the skin on occasion. I also get tremors in my hands/arms and legs... No idea why, and to be honest, I never thought to ask about it.  LOL

 

I had it before going gluten-free a year and a half ago, and I still get it now. My hand tremors that I thought were linked to (self diagnosed/guessing) hypoglycemia are lessened but the twitches still occur. My twitches don't seem to be linked to ingesting gluten, but that's just me.

[Bdo]

Cramp fasciculation syndrome has been tied to celiac and also to nightshade and cholinesterase inhibitor sensitivity because of excessive acetylcholine. Hope that helps someone.