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peppe271

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Hello,
I am 32 and have a small story to tell. As far as I understood (I have no physiatric background, I am a pharmacist) als never sets on with feelings such as "tired muscle", or pain, or different sensivity than before to touch. Also, I think i have understood that it is a "all or nothing" thing, meaning that from one day to other the person will not be able to move one particular muscle anymore. I think also to have understood that twitching can be an ALS sympthom but when the illness is at such a stage that twitching itself would be a secondary symptom.

Hope you can follow me to this point and correct if necessary.
My question is the following: is there any fatigue and pain in ALS,both as early symptom or at a later stage? I am somewhat worried, hence I would like to describe what is happening with me.

Little disclaimer: I understand perfectly that you people are fed up with somebody coming here asking for the symptoms and such.I will be precise and optimistic - no added drama :)

I've become father of a beautiful little boy last summer, and after one month spent helping my other half (and working in the meantime) I started to feel very tired. That was very unnatural sense of tiredness, one such as when you would not sleep for several days in a row,but affecting just the mind, not the body itself.Would very often wake up during the night completely damp from sweat. Also, would feel twitching on my eye and the vision became "darker" and slightly less definite, with often eye muscles tireness.

After doing a checkup and blood test, included a heart holter,all was ok) I noticed that my walking changed slightly - felt unbalanced and uncoordinated when standing still - I couldn't keep still anymore as before. Sometimes the tireness would be so strong that whenever I opened the mouth I would automatically yawn. Loads of caffeine helped. The "light headed" trip carried on for long until mid december, when I started to feel better regarding the fatigue and the overall feeling, although I noticed spasm in one gluteus if contracted a lot, which would make me "dance" if sitting on a chair and legs heaviness (both).

At this point I decided to go to a neurologist, who did not exactly perform a visit but made some manipulation of my neck bones, which made a funny (and eerie) sound of exploding bones:D I felt slightly better with my walking, and he prescribed an EMG to the legs (which I will perform in three days.)

During the last holidays, I started to feel twitching at my hips, bilaterally, at my deltoid muscles(both arms) and at both feet.Also, both arms started to feel very heavy and powerless, and while the power came back to the right arm, the left feels often "ants", is in pain, sometimes a "twitchy" pain travels from the elbow to the top of the middle finger, and sometimes feels "numb" under the skin in comparision to the right one.

Also, whenever I try to raise some weights, while the right arm is perfectly fine, the left one feels much more wasted earlier. I can do movements such as turning the key in the keyhole, typing fast with the keyboard (altough left hand is more prone to erros now) and such things. Mobile phone although is slipping often from my hands, even though I think to account this on anxiety which is slowly taking over me.

Knowing your experience, is there that may point to ALS?:roll:

A big thank and hugs
 
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lgelb

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Congratulations on your son. No, your story does not point to ALS.

I suspect your EMG will be normal or point somewhere else.

Meanwhile, whatever comes of it, I'd spend some of the effort you made here to work on your sleep, diet, hydration and exercise outside the home.

Best,
Laurie
 

peppe271

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Thank you Laurie for your kind answer! And for the formatting, I am ashamed now :)))
 

peppe271

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Have a question. In case of bulbar onset, what is the change happening to the voice? Latest days ive noticed people asking me to repeat what I say, more than once. They don't say though what I say is strange, they are all the time telling me to open the mouth. I noticed, in fact, that some muscles of the jaw are more stiff. Dont have though any huge twitch in the head or tongue..
 

lgelb

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"Stiff" speech often goes with being tired. Your EMG is tomorrow, so let us know what comes of that. Meanwhile, enjoy your family.
 

peppe271

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Hi Laurie,
they did EMG to the legs only, and they were clear. They stated that for my other symptoms I should ask my doctor to check also the upper limbs - but at least I know that there is no wasting in muscles where I had balance problems and twitching , which leads me away from als, in my opinion. Tomorrow I have a visit with my neurologist to discuss the findings. My worry stays with my slurred and weak speaking, but I suppose it is more related to anxiety than neurological problems.
 

lgelb

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That is great news!
 

peppe271

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Hi Laurie,

small update. Went finally to a neurologist, had a complete (standard) check up and to her it showed good. She believes I am somatizing a lot, therefore she prescribed me a serotonin reuptake inhibitor. She also prescribed another set of EMG (upper and lower body), plus a MR of the brain. I am still having problems with my speech, although the "tiredness" kind of improved. I feel like I have stiff muscles in my throat, such as need to cough something that is not there. Also , the muscles at the sides of the mandible feel stiff and "pronounced", but I do not have problems with biting food. I noticed when kissing my son it feels like I am missing a muscle in my mouth.. is that something to worry about? I am still afraid of some bulbar issues.
 

peppe271

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Helli, small update. I am again in a cycle of total body weakness. I noticed that my right eyebrow doesn't raise exactly like the left one. For example, if I open wide my eyes like for the surprise, both the palpebrae open together and raise to the maximum but the right eyebrow doesn't raise as much. I can raise it eventually, but I have no make an effort I did not have to before. Is it als or rather myasthenia?
 

Atsugi

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Don't know. We won't diagnose. But we know ALS, and don't see it in your posts. Work with your doctors, please.
 

lgelb

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I am sure the neuro checked for signs of myasthenia gravis. You say you have more tests coming up, so perhaps those will be reassuring. As to bulbar onset, no, that's not what people typically report.

Especially if you are a smoker, obese or have a history of lung or nasal problems, you might consider a sleep study. Does your SO report that you snore or gasp for breath? Or simply make sure you are getting enough sleep.
 
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