Bad Good Bad Good Cycle

[white]

Hi all,

Do you all have jerky movements - muscle spasms?

Tonight we have been to the emergency room two times. first, I took my husband there because he was feeling very tired, was having hard time in walking, he had very intense muscle spasms - jerking movements in his legs and arms - they just came and went...At the emergency room they gave him IV, checked his blood level, and gave a medicine to relax him.. they couldn't find anything... we came home.. but after a while he had muscle spasms again - but not like minor ones that he usually has, these were intense jerky movements.. so I took him back again.. they did a CAT scan, everything looked normal...they suggested us to see a neurologist...

He has been gluten free since july (4 months)

He is very scared and I dont know what to do..

[rinne]

Hi and welcome.

Could you share a little more information? Has your husband been ill for a while? How was he diagnosed? Does he have other symptoms? Do you know what his B12 levels are at?

I do have twitches but I am not sure they are related to the Celiac, I have been thinking they are related to Lyme disease which I have also.

[white]

Hi and welcome.

Could you share a little more information? Has your husband been ill for a while? How was he diagnosed? Does he have other symptoms? Do you know what his B12 levels are at?

I do have twitches but I am not sure they are related to the Celiac, I have been thinking they are related to Lyme disease which I have also.

Hi Rinne,

Like everybody else, we had hard time in diagnosing him with gluten intolarence..First they said it was acid-reflux --a year later they said it is IBS -- two months later we ordered a lab work for celiac disease, finally, stool test from Enterolab (in Dallas) came positive. so since june15, we know he has gluten intolerance and staying gluten free.

His stomach and intestine pain is almost gone, the gluten-free diet helped him a lot. pins and needles and floaters in his eyes are occuring less frequently, with lower intensity..

His B12 was in the healthy range, closer to the lower level.

B12 293 pg/mL (ref range 157-1059)

but due to tiredness, the GI specialist gave him a B12 shot 5 weeks ago, and a week ago he got another shot.

as far as we know he doesn't have a lyme disease. The major things, now, he is having are muscle spasms-jerking, light headedness, and fatique. this morning we will go see his doctor.

[marciab]

I had myoclonus (jerking) and problems walking (ataxia), but they went away after going gluten-free. The myoclous went away after 10 months and the problems walking went away after 1 year.

Actually, the myoclonus may have gone away earlier, I just didn't know it was possible and kept on taking my meds (Klonopin). I didn't realize I was getting better until I figured out that the meds made me feel completely drugged during the day. I had problems with fatigue and feeling drugged for 16 years so to me this was normal.

My myoclonus was most noticeable when I would try to fall asleep or try to write. I would jerk myself awake everytime I went into REM (sleep disorder test confirmed nocturnal myoclonus). Sometimes they would be intense enough to feel like I had cleared the bed.

And my hand would jerk each time I would try to write. My signature looked like two seagulls. If I slowed down and really concentrated it was better, but then my hand would eventually start jerking again. It was very frustrating.

As far as mobility problems go, my legs would get wobbly and feel like they would not suport me. I needed a motorized cart to grocery shop, but if one was not available I would use a shopping cart to lean on. I would get stabbing pains if I continued to try to walk. The right foot would drag on occasion.

Basically, I was told that I had chronic fatigue syndrome and that people with CFS have nuerological problems.

Thought I should add that I have seen plenty of doctors. At least 5 nuerologists including the Mayo Clinic in Jacksonville, FL. My mri should white lesions on my brain which they said were no big deal and consistent with people who have migraines. I had a few migraines 20 years ago.

Editing to say I am sorry this is so long. But, I wanted to add that I still have some neurological problems creep up from time to time. The myoclonus comes back if I get any gluten. After about 6 months on the diet I started having a fluttering feeling in both of my arms. I went away thankfully.

Hope this helps.. Marcia

[loraleena]

The American normal for B-12 is way to low. Japan looks at a low normal as 550 I believe.

[georgie]

My B12 was 248 and Dr did weekly shots for 6 continuous weeks with me. Perhaps you need more B12?

[white]

Thanks for all. We saw his neurolojist this tuesday. It seems like the relaxation medicine that doctor gave him at the ER made his muscle spasms very intense..As its effect dissapeared he felt better - since tuesday he has no muscle spasms. I hope it will go like that.

[white]

nope! it did not go like that - the jerking is back. his legs and arms jerk constantly when he tries to fall in sleep - it is frustrating since we know that he is 100% gluten free. shampoo, food, drinks...everything.

it might be RLS (restless leg syndrom) or something else...we are working on it )

We are seeing a new neurologist, he is running bunch of tests, so, lets see.

[aikiducky]

As others have said, neurological symptoms can take quite a while to clear after starting the diet. 4 months is not really that long in this respect. So I hope he'll still improve.

Pauliina