ALS Support Community

Its visible, right leg calf visiby smaller than left, in fact the whole leg seems shorter. twitches are all over, legs, hands, fingers, eyelid, lips everywhere

When to a Neuro, normal strenght and deep tendon reflexes, he asked for a brain MRI and not an EMG.

Blood work showed very low testosterone Total T = 121, doc said for a 20 yr old male, it should be around 700. Dont know if that contributes to the atrophy.

Copy all that. I’ve had my testosterone tested too, several times, and it has ranged from 200-400. I’m thinking about testosterone supps, but once you start on those, it’s a long term commitment and can impact fertility etc.

I pay a lot of attention to research and it seems that they have created Leydig cells (the ones that produce testosterone) in a lab and that one day they will try injecting it in humans. That would solve the low t problem. But it's probably a few years away

The fact that i dont have weakness anywhere is reassuring. I also have sensory loss, when i got a haircut back in september, i noticed that the water felt different on one side of the body, and that points away from als.

Yes. Those are both promising signs pointing away from als.

Have you seen a neuromuscular specialist yet? were they able to rule it out? I thought one clean EMG was enough to rule it out completely, but theres been cases where it missed early als in slow progressors.

I’ve seen five neurologists and two neuromuscular specialist. I’ve had four EMGs. I’m now seeing the head of the als clinic at UC San Francisco. She said she is not able to rule out als during my appt a few weeks ago. I see her again in February and have my fifth EMG at that time. I want to believe badly that an EMG can’t miss early als, but I have my reservations. My EMG in Feb will be telling

Did you get tested for kennedys disease? i was thinking mmn but it doesnt have bulbar symptons, sbma is a possibility. It happens between 30-50 years. How old are you today?

Wishing you the best in advance.

I haven’t been tested for Kennedy’s. According to my neuro, my EMGs have ruled out muscular dystrophy. I’m 42 years old.

Kennedy's is both limbs and bulbar, it's probably the last alternative. For me it's atrophy of the neck muscles, the tongue seems to have shrunk as well, but strangely enough instead of difficulty, it's easier than ever to swallow. I've no idea what's going on lol

How are things going? Any update?

I'm waiting for a brain MRI to be scheduled.

No. Nothing new. Next EMG scheduled for 2/4/20. How bout you?

No progression. But idk, in my mind atrophy with fasciculations will end up being something bad. Thats not something that happens normally

The uncertainty fuels the anxiety only making things worse.

do you have like facebook or something where its better to talk?

Moderator approval thing takes time plus in not here much