Weakness in legs and arms + twitching

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spbalazs

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Dear All,

About 4 weeks ago I went for a gym class and I noted that my legs felt a lot weaker than usual.
I normally can do a wall sit for at least a minute but after 20 seconds I dropped to the floor with wobbling legs.

I remember saying to my colleagues after for a few days that my legs felt weak.
It never went away. If I cycle 15 minutes, lamy calfs would ache as if I ran for a half marathon.
I have twitching all over my body ever since and my face muscles wobble when I form my lip even just to drink water.

I saw a neurologist 2 weeks into the problem. Part of his observations were:

In the lower limbs, muscle tone was perhaps slightly increased with three to four beats of clonus in the left ankle and two to three in the right. Power was preserved as was muscle bulk. The reflexes at the knee and ankle were brisk with some spread and the plantars, I thought, were extensor.

I read that brisk reflexes can be a sign of ALS and this with the added weakness I have been sensing makes me worried.

I will go back next week and ask for an EMG.
Any thoughts you have on the above I would appreciate it.
 

lgelb

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Slightly increased muscle tone and a little wobbliness, is far from a scarlet letter for ALS. What did the neurologist conclude/what was his suggested plan?

ALS does not typically present as you have described. An undiagnosed virus or nothing is far more likely.

Best,
Laurie
 

spbalazs

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I have decided to switch neurologist as the one I had went on holiday fine.
To cut long story short, the other neurologist got a lower spine + neck + head MRI and blood test, they were all fine.
His diagnosis was anxiety.
Since then I got this letter from my first neurologist which contradicts his findings (which were “all reflexes” normal).

So my plan is ask for an EMG in the hope to rule out MND.

Having said that this may take up to 3 weeks so it keeps me worries.

In summary symptoms are:
  • Perceived weakness in left leg, ankle and calf area mostly especially after light/ moderate exercise
  • One day for a very brief period of time I could not tilt upwards my left feet, no matter how hard I tried. This resolved in 2-3 minutes.
  • Trembling lips when shaping them for drinking or smiling
  • Babinski sign
  • Brisk reflex lower limb
  • I used to have migranes/headaches but was prescribed amitryptiline which made those
Nothing abnormal on spine + head mri, blood test (blood test looked for all sorts, at least 50 different markers on it)

I appreciate most of the above could be due to anxiety, except the Babinski sign which if I am correct is a signal that something is up.
 
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spbalazs

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Dear friends,

I have received a call from the laboratory processing my blood results. They said my creatine kinase (CK) was higher than it should be and because I complain of leg weakness they wanted to do the test again.

I broke down in tears after the call.
I know that increased CK levels + leg weakness that is getting worse are both an indicator for ALS.

I also have been having bad headaches. Throughout the day, not so much recently.
But headaches started after I started to experience leg weakness and I think that may have to do with my anxiety.
 

Nikki J

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Again you are overreacting. Cpk is incredibly nonspecific. Many PALS have normal or low cpks.
there are a million reasons for an elevated cpk
 

spbalazs

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Thanks Nikki I hope you are right.
But my legs felt weaker today than ever before. It almost feel like they will stop responding. It is a much bigger effort to move them than before.
And I remember the other day I could tilt up my feet for like a minute. I was trying but one of them just would not come up.
In the end I managed but it worries me a lot.

I am having another blood test tomorrow. I will ask my GP to check my reflexes and strenght again, as I am not due to see my neurologist for another week.
 

Bestfriends14

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My husband has a normal ck level and he has ALS. In fact, during the time that I have known him, they've always run normal.
 

EricInLA

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Reading your posts, I take it that you've seen two neurologists, neither of whom suggested you get an EMG? It sounds like you are the one who is pushing for this. If I've got this right, you should not be concerned with ALS in the slightest. If motor neuron disease is even a small possibility, any neurologist would suggest that you do this test. Before I even got to a neurologist, my primary doctor was telling me I would need to do an EMG.

The other symptoms you mention could be caused by many, many different things. Especially the CK levels, which as Nikki says, are incredibly nonspecific. Mine are normal, and I have ALS.
 

spbalazs

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At a time I saw them, I went to see them due to my headaches primarily.
I did mention legweakness, but when I saw them it was better.
They did reflex, push pull tests etc, this was 2 weeks ago and they said power is normal, though one noted the Babinski sign.

Is it not possible with ALS that some day your weakness is better and some day they are worse?

For me initially it was bad. Bad enough I went to ER.
For a period of time they felt better, but at a time I had very bad occipital headaches and my theory is that I did not notice my legs as my mind was locked in on the headaches, which I think maybe due to stress/ anxiety.
 

spbalazs

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Dear All,

Thank you for your continued patience with me.

I met with my neurologist and with an osteopath today.
Both said:
  • I don’t have clinical weakness. One side of the body is stronger than the one I feel is weak. But they are not concerned about that.
  • Plantars reflex - Babinski sign was difficult to evaluate. They said if they have to choose then they go down. Which is good, though they admitted it is not very responsive.
  • Reflexes are brisk, they both agreed which could be due to anxiety.
  • My blood tests came back again high of CK serum which usually means muscle is being destroyed by some abnormal process, such as a muscular dystrophy or inflammation. I looked through possible reasons other than the above, why CK levels could be elevated and nothing applies to me.

The CK levels and perceived leg weakness is keeping me extremely anxious.

I have a middle spine MRI next week and an EMG also.
One thing that was interesting, I mentioned to the Physio that I hope that can rule out ALS.
She said, “Well maybe the EMG won’t be clean because she did notice one leg weaker than the other” or something along these lines, but I should not worry.

So afterall it seems with my case, with EMG they can’t rule out ALS. This is my take away which is worrying.
 

Nikki J

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No clinical weakness
Babinski is not positive. A leading ALS specialist told me it is not really a valid test if you know what it is. In other words scratch that as a concern
brisk reflexes - not a concern as you were told. Common in anxiety
again cpk is incredibly non specific and not clearly correlated with als anyway

I have no idea what the physio meant except maybe saying that emgs can be abnormal in many ways for many reasons and most have nothing to do with ALS The emg can indeed rule out ALS but the normal clinical exam has already done that because you need both things emg specific findings and abnormal exam to diagnose ALS

clearly you are not going to be reassured but I ask you not to post again until you have results and your neurologist’s interpretation
 

spbalazs

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Hello everyone,

I have an EMG test tomorrow.

I am wondering, shall I expect the neurophysiologist to provide some sort of feedback then, or do I normally have to wait to get the results from my neurologist?

I am worried because ever since I have this perceived leg weakness, my left leg twitches constantly.
Sometimes behind the knee, sometimes in the calf, and sometimes in the thigh or the ankle.
My leg also moves by itself sometimes as the twitches are so strong.

Thanks!
 

lgelb

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It varies. But one way or another you will find out. Please stick to what Nikki laid out, and do not post again until you have results. Remember, "perceived weakness" isn't clinical weakness.
 

spbalazs

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Dear All,

I met the neurophysiologist today.
  • I explained that I have been experiencing leg weakness for 4-5 weeks
  • lots and lots of twitching, body wide but mainly in the left leg.
  • I told him I have mildly positive Hoffmann sign
  • brisk reflexes
  • I told him about my high CK levels 500-1000.
I told him that the neurologist referred me to him to “put my mind at ease”.

The actual EMG test bit lasted less than 10 minutes.
He poked me in a few places including the tongue.
In the end he sat me down and said all is good and nothing on the test suggest ALS.
He said whatever is causing my leg weakness, the answer is not MND.

He kindly asked me to stop looking for diagnosis on the internet.

I would like to thank you all from the bottom of my heart for your help.
 

Nikki J

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Thank you for returning to tell us. Congratulations.

it sounds like you were given very wise advice. Have a long and happy life!
 
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