ALS or something else?

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New member
May 12, 2023
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I´ve read the instructions and read before posting -section and aware of pointed issues. My “case” is still confusing me and decided to post here for some opinion.

To wrap up, I´m a 40 year old male with an athlete background. It was 1,5-2 years ago when I started to have some muscle aches in the legs, muscle twitches mainly in nighttime or resting, cramps and stiffness. At that point my physical performance started to decline, even though I was trying to exercise as I was before. At that point I was struggling with my usual jogging and could only run about 1,5-2 km instead of long runs I was used to.

I then went to neurologist/ALS specialist in fall 2021, who noted one brief fasciculation and a bit fatiguing on muscles, very brisk reflexes. Diagnosis was “follow up for probable nervous system disorder” and said that I would have to come back in 6 months if I get worse or get an ENMG.

At the end of 2021 I was only able to run 6-700 meters and walk 2 km. Twitches appeared in upper body also, occasionally. In that point I had ENMG which was “clean” but there was “some biggish motor units” and more symptomatic leg had a decrease of motor nerve conduction speed (- 15 %) in the sole of the foot.

Last summer I lost the ability to run quite completely, now maybe 100-200 meters max. Muscles fatigue very much. Last August I went to another neuromuscular specialist, who noted that muscle strength was somewhat normal but fatiguing was abnormal (only could hold my legs up for 15 secs and stay tiptoes for 15 secs). She had me to ergometer test and result was that I had muscle endurance of 80 year old. I also started to develop speech problems especially after physical stress, which was noted by the doctor. She had me some blood tests for Myastenia or Myopathy, both were negative. She was a bit confused and said that I should come back in 6 months or so if I get worse and have a some kind of brain stimulation test of nerves.

Twitches are still around, now everywhere and aggravated by exercise. There are aches and a bit of tingling and numbness also. I´ve lost 5 kgs of weight despite isocaloric diet. Now my right leg ankle dorsiflexion strength has gone down from 20 kgs to 8 kgs by a physiotherapist measurement, he suggested that I should have neurologist meeting again Though, I´m still able to walk about 1 km, right leg becomes stiff and tired, followed by right hand and eventually left leg. Basically every other disease is ruled out (MS, Brain cancer, CVD, asthma, thryoid problem..)

What do you think about this? Should I prepare myself for bad news in the next appointment with neurologist? Could ALS develop this slowly, within 1,5-2 years symptoms onset?
I don’t believe it is true every other disease is ruled out. There are a lot of diseases ( neurological and other). Not all can be eliminated by blood work and you probably have not had every obscure blood test there is. Also mg and mmn for two examples can not be eliminated by blood work alone
it sounds like you need another emg. Slow progression ALS does happen certainly though your essentially normal emg is encouraging
Thank you for the answer. You are right, not all disesases are outruled, just most common and not 100% sure. I guess it is wise to have another enmg also.
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