Muscle weakness, cramping and twitching

[Guillaume]

Hi, my name is Guillaume, I'm 27 years old.

I would like to share with you what happened to me three months ago, in the hope that someone has any advice for me, or may have experienced these symptoms.

Almost 3 months ago, while I was at work, my right hand suddenly became weak and clumsy (difficulty with the mouse, holding a laptop, difficult to write), followed almost immediately by fasciculations all over the hand and arm. I had never had that before.

I didn't worry and went to see my doctor who thinks I have lyme disease as I work in the environment, but the results of the lumbar puncture I did a week later didn't nothing revealed, only the blood test is suspicious.

Only 4 days after this episode, I felt the same weakness in the other hand with fasciculations.

Then within two months, both of my legs also became progressively weaker, with muscle wasting, and a lack of balance, although I can still walk and stand.

I also developed cramps a month ago all over my body which have not stopped, in the legs, in the fingers, the hands, almost every muscle but not at the same time, this continue.

I am now starting to have more trouble eating and my voice is less strong although no one has confirmed that.
I can't tell if it's anxiety that adds these last two symptoms or if I have damage in several points simultaneously

So I end up with fasciculations all over my limbs, cramps and weakness in my hands and legs (not feet), but no failure weakness yet, which means I can do almost anything except running, going down the stairs without shaking because of weakness,or writing properly for example,
it’s with more clumsiness and the need to stop more quickly beacause it’s cramping.


I did an electromyogram with two muscles for the arms and one for the legs which was clean a week ago, but with brisks reflex

The neurologist following me does not think it could be ALS, but is not sure why I have diffuse fasciculations, cramps, and this weakness in the hands and legs. I've been on lyme antibiotics for two months, but it doesn't really seem to be helping, and she told me it's best to stop.

Is there still the possibility that it is another disease that can only cause these symptoms?

It's only been 3 months, and the weakness is not frank but progressing insidiously, I fear that we will not realize the diagnosis on the EMG until the next one in a few months.
does it look like ALS slowly progressing in several places ?

Thank you in advance for your help and advice !

 

[Nikki J]

Slow progressing yet symptoms all over does not sound like ALS no. Especially in light of a normal emg

ALS impacting all limbs and bulbar in the space of 3 months would be unusually aggressive, you would be profoundly disabled and your emg would be unequivocal

slow progression would stay in one area for a long time doing more and more damage before spreading

yes it sounds like something else. Let your doctor figure it out

 

[Guillaume]

Thank you very much for your reply !

I forgot to mention that I did all the MRIs,
with my leg weakness i can stand and for my hands I can bend my fingers (but lost of pinch)
do you know if the EMG is sensitive enough for beginner weakness? does the muscle failure have to be marked for it to be visible? it's only been 3 months, and I understand that the process is done by elimination and takes around a year to be sure, I'm a little lost

I also understood that the cramps all over the body associated with weakness and fasciculations was very worrying

Thanks again for the help

 

[Nikki J]

It only takes a year because most people do not immediately go to the doctor and even once they do the neurologist and emg are not often the next stop

emgs are very sensitive

 

[Guillaume]

Hi, unfortunately things have progressed since my last message

I need help, I'm desperate and I don't have much hope anymore, I don't have any more moral strength.

There is a slight aggravation, because I'm starting to articulate a little less well, I saw the neurologist again. He looked at my tongue and saw fasciculations, I don't feel them but indeed there are, and looking for myself at home, I wanted to cry

he didn't find any strong clinical weakness, but shaking legs, sharp reflexes in the legs, and I have to go see a MND specialist on Saturday for more investigations and a new EMG.
I can't do it anymore, I know it's done , it can't be anything else anymore, cramps, fasciculations, weakness and now fasciculations on the tongue, it's only been three months and that's why nothing had been found on first emg, yet I had kept a little hope


What to do now? It's a KO for me

 

[lgelb]

I have no idea why you think this way. Sounds like you are knocking yourself out, honestly.

As Nikki said, if all this were aggressive ALS, your EMG and ability to function would look very different. There are many conditions, most much more treatable, that can underlie what you describe. There are even completely benign fasciculation and cramp syndromes.

Antibiotics used for Lyme and Lyme itself, as well as other bacterial infections, can also contribute to issues like yours.

So I expect your visit to be reassuring as regards ALS, and you will know more soon.

 

[Guillaume]

Hi,
I'm sorry to have reacted like that,
This new symptom and progressive weakness made me really worried so I'm going to wait for my appointment to figure it out.

Do you think EMG with my symptoms could eliminate this disease even if there are recent? Also I didn't know that other diseases like lyme could cause speech symptoms, progressive limbs weakness or cramps

thanks for your support
it really helps me

 

[lgelb]

Yes, I do, and said as much.

As a bacterial infection that can attack the nervous system, Lyme can cause lots of problems. Whether it's contributing to yours, I cannot say.

These are questions to ask the MND specialist on Saturday, along with what diagnoses are still on the table and what next steps should be.

 

[Guillaume]

Hi thanks for the reply,

I saw the doctor who did EMG testing of my left arm, left leg and tongue.
He told me he was sure that I didn't have motor neuron disease and that he wasn't very worried. The EMG was clean. He told me brisks reflexes are bilaterals in my case.

if my symptoms are stronger on the right side and he only tested my left arm and leg, is that enough to rule out the disease?

I am quite reassured even if I fear that my condition will deteriorate.

To be honest, I've seen some posts that I never should have seen that said emg might be clean "in the beginning" , but then how many months is "the beginning"?

thank you for your help

 

[Nikki J]

Yes. 2 normal emgs, your neurologist says not MND and your stated symptoms all say no. For contrast my symptoms started in one small area. 7 weeks later ( still isolated weakness) my emg was abnormal ( the emg was coincidental already scheduled for research)

we address the too early part in the sticky. It is mostly due to upper motor neuron onset with an abnormal clinical exam Not your situation.
it is time to move on. Return to your gp go forward with the question what is wrong and stop looking for ALS

 

[Guillaume]

Thank you very much for reply

I really hope you and my doctor are right and that's not it, because my cramps are painful and I'm losing muscle, slowly

In my case it started just in the hand, but it felt quite quickly in legs it's true. In fact it spread quickly but with a slow progression on the weakness.

I think the insidious progressive weakness may not be visible for long on the EMG (maybe not before 6 months) while the frank weakness is almost immediate, what do you think ? I may be wrong
this would also explain why a longer diagnosis to establish in a few cases can be related to a slower progression of the disease

 

[Clearwater AL]

Guillaume, you've posted 8 messages and got 10 replies. You've asked another question.
You've had too clean EMGs. As Nikki said, any more questions must be directed to
your neurologist.

And.... we have noted, being just 27 years old the odds against you having ALS
is 6 digits pretty much affirmed by Neurology. Finally, you like so many others...
need to ask for help with Health Anxiety.

Hope you find the path to let go of ALS worry soon.

 

[Guillaume]

It's true that it worries me,
Unfortunately things got a little worse.
I did another EMG and the neurologist put this:

For the clinical testing :
No motor deficit on segmental testing of the 4 limbs apart from the thumb-index pinch at 4 and the hip abduction at 4/5.
For the reflex they are symmetrical.

For the emg: few abnormalities but discreetly neurogenic traces in the Brachioradialis Dt and the Middle Deltoid Dt
She says it’s almost nothing but I understand this is not a totally clean EMG

I didn't have that a few months ago, and my strength was 5/5 at the index thumb and hips, it does seem like there is muscle degeneration,
why discreetly neurogenic? What does that mean?

Thanks for your help

 

[Nikki J]

Ask your doctor. We would only be guessing - especially without seeing the emg itself. Chronic neurogenic changes are common and not indicative of ALS. Bottom line though your doctor apparently isn’t worried.

again you need to follow up with the doctor. I am closing this thread as we are not helping you obviously. Please do not start another unless you are reporting a diagnosis. I do not believe it will be ALS but reporting any diagnosis helps the worried here see what happens