Twitching for 3 years, no weakness, but now cramps?

[KarenNWendyn]

If your EMGs have been normal and you don’t have clinical weakness on an exam by a neurologist, then you don’t have ALS. Period. I don’t care how many times your tongue twitches or how it looks in the mirror. You don’t have ALS. Period.

Please don’t keep asking us more questions. That only fuels your anxiety and we don’t have time for it.

 

[rasmus]

Hello, I'm afraid I must trouble you again

My symptoms still persist, my back and neck feel like they're getting increasingly stiff, and nothing I've tried has helped significantly. I've tried magnesium (although not very large doses), stretching, rest and a muscle gel that's usually great for everything, no change. I've had the flu for about a week, so that's probably not helping, but it seems to be almost over, while the muscle issues have not really improved.

Yesterday I walked a short distance, maybe 500 meters, and I was left out of breath, dripping in sweat and my calves went very stiff. However I walked a longer distance later that day and even jogged a little, and it didn't happen again, at least not as bad. I read an article about a 19-year-old by who died of ALS, and based on the article his only symptoms were fatigue and neck and back pain. Based on what I've read that sounds like a pretty unusual way for ALS to present, but it still scares me because I can see that in myself.

I'm still a bit confused about the nature of my cramping, and whether most of it is even really cramping or something different. Do you think I should go to the doctor again for this? The last time I've spoken with a doctor about this was almost 2 years ago, with my second EMG. During that appointment the neuro noted that it's unusual that twitching would persist that long in an otherwise healthy person, and now it's been over twice that long and the twitching is still going on.

I've never had a strength test done by a doctor either, neurologist or otherwise, but I suppose if I had clinical weakness almost two years ago it would be pretty evident by now. I can still do every test I've tried, squatting, sprinting up the stairs, walking on tiptoes and heels, lifting the same weights as a couple of years ago, and I can still drive and play the guitar normally.

I mentioned the dent under my left wrist earlier, I can't say that it has changed at all, but my watch feels like it's hanging looser than usual on that wrist, like the wrist has gotten thinner, but when I tried to wear it on my right wrist it felt pretty much the same, so I'm not sure.

 

[lgelb]

Forget the article and the neuro's offhand comments about twitching. There is no future in either. You might as well worry about an oddly-shaped cloud.

The now is, you are doing things that people with ALS can't do 3 years into the symptoms you are worried about, and so you don't belong on these forums. If you have fatigue and/or cramps that prevent you from doing something, see an internist.

Best,
Laurie

 

[rasmus]

Hello. I've been trying to live my life and change certain things, but the back pain continues, and I think it's moved more towards my lower back. I haven't really had any abnormal fatigue lately, I can run pretty normally for my level, although it hurts my back and my side starts to pinch pretty bad and pretty quickly.
I've been eating magneisum tablets for a couple of weeks now, streatching and sleeping in a different bed than before, but it doesn't seem to be making a difference.
I also sometimes feel like my speech is slurred or slower than normal, I feel like sometimes when I start speaking there's a slight delay and I sort of swallow the beginning of my sentence, and sometimes I feel like I'm skippinh letters in words and they come out sort of lazy. I've asked my family if they think my speech has sounded different lately, but they said no.
Another thing is that very often when I flex a muscle hard, it starts twitching right after? Is this concerning? I read a neurologist online say that it might be. The twitching usually stops when I move the twitching muscle.
While I can't say this is limiting my life, it's not getting better, and it keeps bothering me. I'm going trough a pretty stressful period of my life in terms of studies and personal matters, so that combined with the anxiety I have about my symptoms probably isn't helping, but it is very distracting that I can't focus on more important things because of this.
My dad doesn't think going to the doctor because of this again is worth it, he says it was investigated well enough 1.5 years ago. I feel like if I went to a PCP with these symptoms now, they'd either just tell me to eat more magnesium or refer me to a neuro, and then it would take months to get any kind of answers.
There's a site in my country where you can ask public anonymous questions from various doctors, including the leading ALS specialist here. I've been reading some of his replies to other people, and he has stressed to several young people that while rare, ALS can occur in people as young as under 20. I tried to send him my own question, but it hasn't been answered yet, and probably won't be.
So, is it correct to say that in ALS cramping and stiffness don't present periodically over several years?
According to my understanding fasciculations are an LMN sign, so is it correct to say that if my twitching 3 years ago was related to an MND, there would certainly be clinical weakness by now?
Close this thread after this if you must, but please answer these last questions.
Thank you

 

[ShiftKicker]

Rasmus, it's time to go see a doctor with your questions. This forum is not set up for long term support for those who are worried about ALS. The DIHALS subforum is here to answer some questions and provide information to those with brief concerns. There is not much we can do once we have answered people's questions on their subjective experience. This forum's primary focus is support for those who have been diagnosed and for those who care for folks with ALS.

You are clearly doing a huge amount of online research and spending a lot of time searching for minute details to support your fears of ALS and are in need of one to one contact with a person who can answer all the questions you are asking, and as they directly relate to your experience. A person who can examine you in person. You visited a doctor 1.5 years ago, so you now have a baseline that your doctor can measure against now to track any changes that have happened since.

Please stop feeding your fears online and see a doctor now to ask your questions with someone who can examine you and explain what they are observing as they go. Write down every question you have asked us here and take them to a medical professional- we are not equipped to help people who desire actual medical attention and demand answers we are not able to provide. It is time to stop posting here till you get seen by a doctor.

 

[rasmus]

I understand, I hate to outstay my welcome, but I feel this could be serious. I know you're not doctors, so I've tried to keep my questions strictly ALS related. I'm asking generally speaking if you think that there's any way this could be ALS at this point. If not, I also feel like it could really benefit others like me reading this forum to hear it from you.

 

[rasmus]

Also, with all due respect, my last doctor visit 1.5 years ago was just the EMG, no clinical examination, and like I said I don't think that's visible on my medical record because it was sort of an off the record favor. So the only thing to compare to would be the PCP visit 3 years ago with the very brief examination and the first EMG, also 3 years ago.

 

[Nikki J]

So go back to a doctor. Twitching is meaningless. Pain is not a presenting symptom and stiff muscles in ALS are either spasticity which a doctor can detect or rule out or contractures from disuse/ paralysis which you don’t have. None of us see ALS in your posts no matter how many you make.

A doctor can examine you as you are now. If there is no clinical weakness or spasticity you have confirmation of no ALS. If you have either the doctor will explore possibilities ALS would be extremely low on that list if present at all

This thread is going nowhere so closing it