maybe some help?

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tibati

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hello all,

this forum is extremely interesting and helpful. I'm offering a short read so maybe I can have ideas on what has been afflicting me for the past 2 years (almost)

im 44yo male. in April 2020, I woke up one morning and when I stepped foot on the floor I felt some tingling under the feet, that lasted about 20 seconds while walking. same thing the next morning, and the next etc... it started, over the next few days, to go up higher the leg, the hands, arm etc... it was very light, but constant 24h per day. I felt a bit like when you have goosebumps, and you feel that "wave" flowing across your body. but in permanence.

about a month after, I started to get twitches, mostly lower legs at first, but that progressed very quickly all over the body. it was mostly just one twitch somewhere, another twitch somewhere else, very randomly. I was also having some burning sensation, weird buzzing nerve sensation, hair loss, I had random muscle and articulation pain that only go away with daily magnesium etc...

went to the doctor:

all blood work normal, MRI of head, neck and spine normal. internist almost kicked me out of his office as more bloodwork was normal. First EMG done 3 months after initial symptoms, normal, except ulnar nerves.

about 10 months after initial symptoms, second EMG normal, except ulnar nerves.

the tingling is all over my body, even face, and its 24/7. still losing hair, still weird nerve sensations, still a lot of twitching, sometimes just 1 twitch and sometimes at repetition at the same place, my left leg is stiff and sometimes I feel like I walk "strangely" because of it, when I scratch myself I feel like I always hit the nerves, as if they're oversensitive. I also find my members get numb very quickly, like if I cross my legs for example, or if I place my forearm on a table corner. up to this day I still need magnesium everyday to prevent muscular pain.

I've tried going off gluten, naturopathy, osteopathy, almost anything you can think of. maybe of interest, just before the symptoms started, I went through a very very nasty separation that was extremely stressful. it's still not settled.

my question, does this resemble ALS, and if not, anyone has an idea to see what direction I can look? I really really really have run out of ideas.

THANK YOU!!!
 

affected

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Great news is that you are not likely to be suffering a terminal illness with what you are experiencing.
Have a really good slow read here as it contains a lot of detail.
We aren't doctors, but we know ALS and you don't have a single symptom of concern.
It would be inappropriate for us to try and guess what is going on - you need to ask your doctors who are examining you and working with you. After 2 years however, it is unlikely they are going to find anything terribly sinister, which is great news.
 

tibati

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thank you affected... I forgot to say that I sometimes shake. and I find that if I fill up a pot of water for example, because it's heavy, my arm shakes because of that...
 

lgelb

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Sleep, stress, exercise, diet, and hydration are all good places to start. If Mg helps, it is likely that you have other imbalances or deficiencies, anything from sugar to sodium. Trying a B complex with only 100% RDA and iron if you are not getting a lot are also possibilities.

Another approach might be therapeutic massage / physio with a qualified professional. When muscles get tight and jumpy, it often feeds on itself.

Best,
Laurie
 

affected

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You are welcome, shaking when holding things is not a symptom, so you are still far better working with doctors that can examine you. We can give general advice like looking after yourself, but only a doctor can truly give specific advice.
 
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