Can’t believe I’m back again

[Jclay12]

Greetings all.

I’m ashamed to say that I’ve been down the als rabbit hole before and finally managed to dig my way out. However, I have new unrelated symptoms and I’m spiraling again. A month ago, I started body wide twitching suddenly. I have never twitches before but thought nothing of it. Over the course of a week or so, I started cramping in my hands and feet. I’m talking my feet and hand would cramp so painfully that they could move. I went to see my pcp thinking I have a vitamin deficiency. He ran the usual blood work plus a couple extra, like magnesium, and it was all perfectly normal. He told me I did have weakness in my right leg though and to see my neurologist. I called neurology who cannot see me until the end of January but asked me to go to the ER at their hospital due to the sudden weakness. I went, blood work was fine but they admitted me overnight for an mri. Mri was fine and they discharged me and told me to try to get into neuro sooner, but neuro says that is as soon as they have an appointment. They said via phone that my age (33) was on my side. I’m in a complete panic now though and just had a hand cramp so painful that I could move it for a couple minutes and I wasn’t doing anything. I see my pcp again Friday but my anxiety is through the roof now and I’m struggle to see what else this could be. I saw that some pals started with painful cramps too.

[Mocadona]

Hi There, sorry you are going through all this it sounds tough. Obviously I'm not a doctor and can't diagnose you but I think ALS tends to come on in a specific spot so the fact that it affects your hands and feet may point away, also your age is a big plus. Apparently in or around half of cases under 40 are familial, so if you don't have a family history history you can half your odds straight away.

In terms of struggling to see what else this could be, there are a huge number of conditions we don't even know about, some serious but the vast majority benign. I discovered one I had never heard of the other day, apparently a lot more common than ALS and thought, here we go I'm going down this rabbit hole now, but thankfully managed to avoid it! Google is very good at giving us the "flashy" diagnosis, but to be honest we are to blame ourselves also for falling into that trap. As the saying goes when all you have is a hammer everything looks like a nail, so we will find the outlier scenario and fit it into our own worst case scenario. I hope you can try get a cancellation or something with the neuro and that it's good news when you do. Keep us posted anyway.

[Jclay12]

Thank you! I had a terrible cramp on my thigh today without provocation and it’s just awful. One more week until I see neuro, hoping it’s good news but I’m struggling to think of anything else it could be.