ALS Support Community

Just wondering as you have been at this a lot longer than me. Do you have any suggestions as to what i can ask my neuro to pursue? I have any appointment in two days. I want another EMG of course but aside from that I really dont know what else to say to them, couldnt get any suggestions from anyone else here.

How are your reflexes? Those are important. Mine were normal in the first few months, then in the lower body turned hypo, and about 9 months ago, in my knees, became absent. A clear sign of LMN involvement.

As much as I hate to say it, IMO, it becomes a waiting game. I’ve done thousands of hours of research, looking for alternatives. I’ve done nearly every test. I saw an infectious disease doc out of pocket about 2.5 weeks ago who spend 2.5 hours with me. She ordered 39 different blood tests and those results are still pending.

Basically, my last two neuros stated, we have to wait and see if you get weaker and keep repeating emgs every 6 mos to a year to “see if the disease fully rears its ugly head”. The waiting is the hardest part, especially when you need to wait six months between emgs.

I noticed you previously mentioned exercise intolerance and brain fog, those are some classic symptoms of CFS/ME. Have you looked into that by chance?

Reflexes are good .... ive looked into it. Idk . Today basically entire body is cramping with use not looking good for me.

Muscle cramping WITH atrophy ...... not many diseases that could be No cramps for you huh?

Fortunately, the cramping is the one issues I’ve not had yet. I got a stomach cramp doing yard work about a month ago, which was the first cramp I’ve had in about 20 years, but I think als cramps maybe just come on as a result of doing nothing, but I’m not sure.

I figure its maybe considered some form of spasticity. This is all pretty terrifying to me .... thanks for talkin it helps. Yea I was thinking that about your situation, no cramps. I mean there is MMN , alcohol neuropathy and a
A bunch of others I cant remember that can cause cramping and atrophy but it seems they are either genetic or even rarer.

Ya. You’re welcome. I know it can be a lonely place out there going through all this So, most ppl with MMN show either a conduction block on the NCS, which I didn’t or they have positive anti-GMI antibodies on blood testing. I had neither. It’s still possible to have MMN without either of those, but not probable. Then you have to factor in that MMN is even more rare than ALS.

So do you have any theories on your condition on why? I was in the military, have had a lot of head trauma and also was a house painter so i feel like I have a lot of risk factors going against me here.

Also smoked on and off for 20 years not heavily. Drank a lot of alcohol.

Drank energy drinks daily. My body is probably loaded with toxins .

My diet was pretty good though . But then again theres people that do way worse to their bodies and dont end up with neuro issues.

My top five theories and I think a combination of these things couple have contributed: 1) I grew up on a farm and was exposed to lots of pesticides 2) spent 20 years in law enforcement and was exposed to a tremendous amount of lead and heavy metals test showed I was high in lead 3) about three years ago, was exposed to toxic black mold 4) I’ve always exercised but about 6 mos before

my twitching started, I started doing really intense cardio 5) I’m a type A personality and have always worked two jobs, got a PhD, and have really stressed my body doing such.

A very well respected als researcher said that genetics in als lead the gun and an environment exposure of some sorts pulls the trigger. To me, that always resonated. I also have a very severe mthfr gene mutation, 3/4. Due to the mutation, my body hasn’t been able to purge/methylated toxins like those who don’t have the mutation. I think that may have something to do with things as well.

Last week I had labs done to see if I hade the HLA-DR gene as well. Those with the gene (24% of the population) can’t purge toxins out of their bodies, especially things like black mold.

Wow thats really interesting howd you figure that one out? Just saw new neurologist he doesn't think I have a neurological issue because my reflexes are +2 and I had a clean EMG 3 weeks ago. What do you have to do to get a second EMG ??

Also he is referring me to rheumatology. Here we go with the ping pong game.