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MHJ1

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Hi everyone

After more than one year living with fasciculations and muscle problems(see previous postings)I have some questions.

It all started with minor muscle twitching i both calves. Visible, but I couldn`t feel them.

Later on it spreaded to my entire body. Feet, legs, thighs, abdomen, back, neck, face.

And now they are very visible and I can feel them all over my body. I can still walk normally, but I had to give up running a year ago because my leg muscles just hurts too much/get sore if I try. My muscles have become very floppy/soft during the past year. Not just in one place but in general.

The fasciculations have changed in size during the past year. Now they sometimes are very large and slower compared to earlier. And occasionally they now can stay in one place for several hours making the muscle jumping-not just small twitches.

Here is my “twitching list”:

Feets: Constant, smaller twitches
Calves: Constant, big twitches
Thighs: Constant feeling of muscle movement-but visible big twitches every 20 sec.
Abdomen: Approx. 10-20 per day
Arms: Approx. 1 per. minute. Big ones. Can stay in one place for hours making a big area jumping up and down.
Back: Approx. 20-30 per day
Neck: Approx. 10-20 per day
Face: Approx. 20-30 per day
Tongue: Happens a few days in a month.
Jaw: 1-5 jaw-spasms every night.

I have suffered from excessive sweating-epecially when sleeping. But also in daytime I sweat abnormally much.
I have no big problems falling a sleep but after 8 hours of sleep I feel totally unrested.
And finally the most of my joints are now cracking/clicking making loud noises when I´m walking.

My questions are:

Have any of you experienced similar development or can you recognise some of the symptoms?
Can MND start/progress so widespread during more than a year?
Is there any other desease that can show these symptoms?

PS: I went to 2 neuros more than a year ago and was told that my fasciculations was “inside the limit” but I am not 100% convinced.

Best wishes,
Mads
 
If it has been more than a year since you've seen a neurologist and your symptoms are getting worse, you need to go back to your neurologists and make them aware of the changes in your condition.

That having been said, your symptoms don't sound like ALS to me. There are diseases other than MND that can cause fasciculations -- BFS and BCFS come to mind. Also, MND usually starts in a single area of the body -- one hand, one foot, the mouth, etc. -- and the progression in that part will stay ahead of progression into other parts of the body. Clicking joints, excessive sweating, and poor sleep are not typical symptoms of MND and may or may not be related to your fasciculations. Only your doctors have the knowledge and the access to you for examination and testing to determine what your actual condition is.

Continuing to try to diagnose yourself by searching on the Internet is really a waste of your time at this point. There is so much misinformation out there that you'll do yourself more harm than good.
 
There are so many things it could be besides ALS - please don't linger on that.

If more Doc Giggle will help, try Isaac's Syndrome.
 
Thanks for your reply.

After more than a year with these symptoms my physical and mental ressources are very low.

But I will try to get an appointment to a neuro for a new examination and maybe get a spinal tap to look for other possibilities
than a bloodtest can show.

Best wishes
Mads
 
Have you ever had a sleep study done? Sleep apnea can make a body do strange things..
 
No. I haven´t been tested for sleep apnea. But I doubt it could have anything to do with my fasciculations (?)
 
Speaking from my personal experience, regardless of their origin, poor sleep certainly makes my twitching far worse. As part of my original work-up my doctor insisted I have a sleep study even though I reported heavenly restful sleep. I refused for almost a year to do it, and finally out of desperation had one. It wouldn't hurt to have one to round out your test results. Especially given that you are not refreshed after 8 hours of sleep. That symptom alone will guarantee a referral to a sleep clinic. In fact, while my sleep study results indicated some mild disturbance (not apnea per se....it was a problem with oxygen saturation falling too low....too often..can't remember the term) that wouldn't necessarily merit intervention with a c-pap, my doctor, in consultation with the sleep doctor, persuaded me to do a trial period with the c-pap to see if any of my symptoms improved. The sleep doctor reported anecdotes of patients with muscle and/or neurological complaints improving after using a c-pap, so I was optimistic. I did the trial to no avail, but at least we can cross sleep issues off the list of what might be causing my own issues. You should do it just to be sure.

Many people with twitching experience great variability in the frequency, duration, and intensity of twitches. Try not to drive yourself mad wondering if some variations are ominous signs. I know those thumpers in one location for hours can be really frightening. My personal best was 13 hours in my thigh. It was so freaky, I could think of nothing else until it ended, and that was over 2 years ago. After this much time it is easier not to be so disturbed by them.

Good luck to you,

Lydia
 
Thank you, Lydia for your response.

Maybe low oxygen during sleep could explain my unrested feeling after sleep.

But so far I understand it wasn´t the explanation to your problems.

Was your main issue fasciculations or other things and did your fasciculations get better or worse during time?

Best wishes,

Mads
 
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