Really worried

[johnny3]

Hi.
First let me say, I am sorry for taking your time, but I feel I need some words of wisdom or comfort. I've read 'read before posting'.

Last year I had twitching in my right calf after sauna/bike ride which I attributed to physical activity and dehydration. It continued sporadically for several months. This calf is now smaller then the other (I measured it) even though it is my dominant leg (I did have sciatica for some time in that leg)
In january the twitching spread to other calf, tigh, arms, eyelid and face. It is not constant, let's say 15-20 times a day. One or at most 2-3 twitches at a time.
I am weaker when holding things-my hands start to shake. Things are heavier. I make more errors when typing.
I went to see a neuro, she tested me, everything was ok except she told she expected more strength from me when she tested my grip.
She prescribed vitamin D, B and told me to get a EMG which is scheduled for next week. I am very worried about it

 

[lgelb]

This doesn't sound like ALS to me, so I would expect a reassuring EMG. Changes in calf size on one side without a change in walking are unlikely to mean much since by the time muscles get smaller in ALS they can no longer do as much. The shaky feelings and limited grip can be related to your stress and concern.

Let us know the EMG results.

 

[johnny3]

Thanks. I will.
I believe I have in these few months developed somewhat of a health anxiety, I hope that the twitches are connected to that

 

[johnny3]

Sorry, what do you mean by change in walking?
That calf gets sore when I walk.
Muscles above my knees get sore/tired when I walk up the stairs.
Also, as I said, that leg gets most twitches.
Most of the twitches in the right leg happen when I stand up and move around after a period of sitting and lying down. They are mostly invisible, more like vibrations.
Would the leg react while moving or all the time if it were Als?
I am trying to comfort myself by saying it's the sciatica because it mostly happens on the back side of the leg (calf, tigh, glutes), but I feel that it's getting more frequent. And my sciatica pains have passed

 

[lgelb]

Soreness is not the same as inability to walk.

Pain from sciatica and twitches from sciatica don't happen in lockstep, necessarily. And the body's memory of pain can keep it jumping for some time after.

Yes, twitches that are mainly when you move point more often to the muscles being a problem, not the nerves themselves as is the issue in ALS.

 

[johnny3]

Hi. I'm having the EMG tomorrow, and am pretty worried by now.
So I have a few more questions.
1. The soreness which I mentioned is now concentrated in my left arm. It feels tired like after a hardworkout even while at rest. But especially if I raise it or hold something, any little thing. My question is, if it were bad, would the weakness spread that way? Because the twitches started in my right calf and that's where the slight atrophy is
2. I can not be sure, but I see a possible atrophy in the tongue. When I stick it out there a two slight dents on the left side near the tip. And it is definitely a bit thinner on that side. This would indicate bulbar? But would it be at the same time as symptoms of limb onset.
Thank you in advance

 

[lgelb]

Weakness from ALS does not typically present as soreness first.

Bulbar/limb onset simultaneously is unlikely, as is your ability to objectively evaluate your tongue.

 

[johnny3]

I had the EMG.
Here it is. Doctor said she didn't see any bad sign

s. And that I could have a check up in six months if the symptoms persist.
How does it look to you?

 

[Nikki J]

The first picture is the emg table. It is blank. I have seen this once before also with a non US member and think in some places they only mark abnormalities. However that is only a guess. Still the doctor said they didn’t see anything bad. You need to trust them and go live your life

 

[johnny3]

Thanks.
I do have two more questions, and I hope I'm done
When the doctor tested me, she didn't put the needle above my elbow (biceps/triceps) and on my thighs. Just a bit above the knee.
1.Does that play any role?
2. I've read on a few posts about emgs being clean and later dirty. Is it possible that it was done too soon, as in tha this i just the beginning of something without visible damage?

 

[lgelb]

1. No, it doesn't. In ALS, even muscles that don't seem to have a problem show damage on the test.

2. No, without physical impairment (and I don't mean feelings or shaking, I mean inability to lift or pull or write etc.), we can believe the lack of nerve damage on the EMG. In the rare "clean EMG early" situation, there is a discernible and clinical impairment.

 

[johnny3]

Sorry for troubling you again.
I have been taking magnesium/vitamin b and d supplements for about 2months.
But it has been 3 weeks since my emg and the muscle twitching has worsened. It is still mostly on one side-glutes-thigh-calf but now it is more often in other parts-face and left hand/leg. I feel more clumsy and bumping into things while walking, but this can easily be just my subjective feeling.
I thought if it were anxiety related that it will stop or become less frequent after the clean emg, but it hasn't.
What worries me is that the doctor said she didn t see much/any damage on the side/area where I have the herniated disc and sciatica so what if the machine isn't working correctly?
I am not sure how to proceed next.

 

[ShiftKicker]

If you are still concerned, by all means, return to the doctor and let them know you still have questions.

You have been cleared of ALS pretty comprehensively, but do not believe/are not reassured the doctor, the emg nor the info received here. What would reassure you?

 

[johnny3]

I understand what you are saying.
I am not reassured because I did not get answer to what's wrong. And the symptoms have persisted and gotten worse. I will contact the neuro again. Sorry

 

[lgelb]

A herniated disk is not necessarily going to show up on the test the same way it shows up for you (the sciatic pain).

Supplementation can easily take months to really help.

A clean EMG isn't going to magically take away your anxiety and any physical issues that might relate to it. But often people do bodywork, sports, arts, hang out with friends, things that can help reduce the focus on issues that are really not dangerous (though focusing them too much certainly is).

I doubt going back to the neuro will be as productive as being monitored by your primary physician, but if it will reassure you, certainly contact them. And since you acknowledge that dehydration (and possibly nutrition?) was a past issue, I would make sure you are keeping both in check.