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Old 11-21-2008, 08:42 PM #1
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Default Long term fasculations and muscle weakness, but not ALS

Hello everyone, I have been having neurological symptoms for the past eight years -- I am a 45 year old male -- including:

1) Persistent fasciculations in both legs, and when I mean persistent, I mean *all* the time, they don't stop, ever. I get the twitches all over my body, but they tend to be less frequent than in my legs.

2) Muscle weakness. I am reasonably fit, play volleyball fairly competitively (BB level) without any noticeable muscle weakness during games, but just the other day I went for a brisk four mile walk that included one steep hill, and by the end I could not walk on my heels (i.e. as in the standard neurological test) -- the muscles that allow you to walk on your heels had no strength in them at all, and the strength did not return until the following morning.

The same thing can happen with my fingers if I strain them too much. There comes a point where I am unable to resist the slightest pressure against the affected finger. Strength always does eventually return however, usually after a couple of hours.

3) When I would let my young nieces swing on my arms, I would be able pick them up without much problem, but my arms would shake so much that they would notice and comment about it. At the time, they weren't not particularly heavy (only five years old or so), so it did seem very strange that it would happen. They're too old for that now, so it haven't tried it in a while

4) I can make my toes cramp up any time I want.

Since all these neuromuscular symptoms have been happening for at least eight years I should say at this point that I've already been down the self-diagnosed ALS road just about as far as you can go without actually really being diagnosed with it. It took a long time to get there, but I am pretty much 100% certain that I don't have ALS.

But I would really like to know what I do have. The only professional diagnosis I have had is benign fasciculations, which is fine, but does not explain the temporary weakness I experience whenever I put more than a moderate amount of strain on certain muscles. (Really, you should not be able to lose all strength in your front calf muscles from a brisk hour-long walk on neighborhood streets).

Whatever the condition is, it's not really been affecting my health or lifestyle (once I got over my fear of ALS a few years ago, anyway), and it doesn't seem to be getting any worse over the years, but it's very frustrating not being able to put a name to it. None of the neuromuscular conditions listed on the Internet seem to be a good fit for my symptoms, so I was wondering if anyone reading this forum might have a clue I have overlooked.

Any assistance would be greatly appreciated!

Thanks

Mike
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Old 11-21-2008, 09:43 PM #2
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Have you been for any testing? EMG, muscle biopsy, etc.?
Weakness after activity is usually... myasthenia gravis or LEMS. There are blood tests for the antibodies. Being negative, you can still have it.
Have you been to a neuro-muscular specialist?
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Old 11-21-2008, 11:23 PM #3
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Thanks for the quick reply, rumpled. I underwent a battery of tests, including a couple of EMGs, when I was convinced I had ALS, and everything was clear (in fact, I remember one blood test came back so normal that it was remarked upon by the doctor as being too good!) I don't believe I had specific tests for the MG or LEMs antibodies, though it was a neurologist who ordered the blood test (about 8 years ago) so perhaps he asked the lab to check for those antibodies (were they were able to back in 2000?).

I thought about MG -- but have never had any noticeable eye muscle weakness so, after eight years, I thought that pretty much would rule it out. Is that right? I have never heard of LEMs -- just looked it up. Wow, that's a scary one, but fortunately it doesn't seem to fit in my case -- the weakness in LEMs is proximal, i.e. thighs and hips, not fingers and ankles and fasciculations seem to be specifically ruled out as a symptom of LEMs.

If you can have MG without any eye mucle weakness presenting, then that's the best fit I can come up with. Since I really haven't been obsessing about it (since knowing it was not ALS) then I haven't been worrying getting a diagnosis. But the brisk walk and the attendant muscle weakness I had last week had me thinking about it again, which is why I posted this question.
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Old 11-22-2008, 06:51 AM #4
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Lightbulb Hellow, tacitus~~

First off before looking at diseases, I'd make sure you were
getting enough magnesium. This mineral is often low in Americans.

I have a thread here that explains how to supplement with it successfully.

Twitching in the body can be due to electrolyte problems.

And then the second most likely is a blood sugar problem.
When blood sugars go down, twitching is very common.
When people are pre-diabetic, or beginning diabetic, weakness is one of the first signs.
Insulin resistance is very common after the age of 40. But some folks are showing it now in their 30's. In fact some kids in the teen years are coming up type II diabetic today.
This is best evaluated with a 3 hr glucose tolerance test.
You can also have a fasting insulin level drawn, as well as a fasting glucose to start. If the fasting INSULIN level is elevated then insulin resistance is present.
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Old 11-22-2008, 02:19 PM #5
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Hi Tacitus,

Your post interested me because I have had a lot of weakness and what I call shaking. Mine was in large part from tetanus, though prior to that when I was under a lot of stress and I held my hand out in front of me it shook quite noticeably.

The thing with tetanus is that it's a central nervous system disease, so although I felt as if my muscles were the problem I knew that it was really my nerves.

I used a lot of vitamin B12 injections until I discovered (through Fred who used to post on this forum or one like it) that Methylcobalamin works MUCH better than cyanocobalamin when comparing the two forms of vitamin B12 in their lozenge form.

Now I use only the Methylcobalamin lozenges and as long as I remember to use a lot more when there is increased stress I don't have the problem, and my handwriting is VASTLY improved.

Now, if the problem you have is related to low B12, then it could be because the mechanism in your digestive system that gets it out of food for you is disrupted or in some way malfunctioning. If that's the case, then you may also be low on magnesium which is gotten out of food by our bodies in nearly as complicated a way as is B12.

I used to have a lot of leg and foot cramps, but since I've added magnesium to my daily vitamin and mineral supplements I haven't had the problem AT ALL.

I hope things improve for you.

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Old 11-25-2008, 10:44 PM #6
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I was diagnosed (and then un-diagnosed) with mg, and I have no ocular involvement. It is uncommon according to what I read, but there are some cases.
Perhaps you should find an MG specialist as you said it seems to fit you best?
As well, the supplements are a great idea. I take extra B (the type mentioned here I cannot spell that word!).
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