ALS Support Community

Hey how are things with you noticed symptoms similar to mine

Hey there. I read your post and thought the same thing. I’m not doing well. Muscle atrophy continues to spread at a pretty rapid pace. The moderators here are positive I don’t have MND, but to me, atrophy, twitching and hyporeflexes equates to lower motor neuron onset als. Have had 5 EMGs. Was supposed to have my sixth last week, but that got canceled due to corona. So, in the meantime

im pursuing all alternative. Saw an infectious disease doc this week who cost an arm and leg a leg and she ordered 40 different blood tests, which I just had drawn today via 18 tubes of blood. I was just happy I didn’t pass out. Lol. We’ll see what those say, but I’m 99% sure I have LMN onset als or what they used to call Progressive Muscular Atrophy. It takes on average of 20.6 mos to diagnose and I’m

20 mos in since my twitching started. They say here an EMG can’t be done too soon, but my first two were clean, third showed issue in one muscle and 4th and 5th have showed issues in 5 muscles all in one leg, but back mris don’t show a reason for my denervation or atrophy. My onset is head to toe, right side of my body. How you holding up?

Wow that would be something if they were able to find something ANYTHING. I dont understand why they arent able diagnose anything I mean how long do you wait?? What else causes atrophy other than MND?

Im doing ok other than the cramps in all my extremities,joint pains, extreme neck fatigue, bouts of exhaustion and not being able to do what I was doing a mere 33 days ago. I cant tell if Im getting worse or not. I do feel like Im seeing atrophy in the back of my neck but during my EMG 3days ago he jammed the needle in all those muscles and trapezius as well as the sterno muscles and chin and said Im good.

I say ok so why is this happening?? He says stop worrying about it so much and maybe it will go away?? I have 3 kids and just got married 8 months ago , its hard to stay positive man it really is especially when modern medicine gives you zilch not even a lead to go on not even a type of treatment plan.

I keep thinking maybe the neruo not being a specialist didnt know what to look for as it pertains to MND but on the other hand he has like 20 plus years of doing what he does and seemed really knowledgable as it pertains to ALS idk what to think anymore. Kind of like you though I would rather be doing things to stop or slow this now which is why I really want some answers.

Another interesting thing is my symptoms started the same day I went to the VA and had an MRI done with contrast , could be a coincidence but I dont think so. Ive had a lot of contrast and exposed to a lot of toxins over the years I think it pushed me over the edge. You get tested for metals??

I hear ya man and agree with all you said. It’s all so frustrating for sure, not having answers. If it’s not als/PMA, then tell me what’s causing my twitching and atrophy then. My dysphasia started the same day I had a contrast mri. This was a couple weeks after I had already started twitching though. Anyhow, I’ve had both provoked and

unprovoked urine tests since then and have come back high in Gadolinium levels. My pcp was lost and said he didn’t know what to do about it. He said to ask my als clinic neuro, which I did and she said it likely wasn’t causing my issues. I started seeing an integrative doc who wants to chelate it out with edta, but I’ve read edta is not a good gadolinium binder and can actually just redistribute it and make it worse.

There’s only one guy in the country who specializes in removing gadolinium and he does it using DTPA and the Frame Protocol. The only problem is, I’m in California and he’s in North Carolina. I was hoping to rule out or rule in ALS completely before I decided on removing the gadolinium from my

body, but I’m 20 mos and 5 emgs in and that still hasn’t happened, while my muscles just melt away. I have a consult on Monday with my neuro for a follow up. Was supposed to do another EMG, but can’t since it’s telehealth this time due to covid.

I’ve joined a gadolinium foruM and several members have twitching and atrophy, and if it wasn’t for my twitching starting a couple weeks before my first gadolinium injection, I’d be all over that and trying to chelate this stuff out, but I’m skeptical, since my twitching began pre-gad and the atrophy I believe has take time to catch up.

The interesting thing related to gadolinium is that I had both injections in my right arm and my atrophy is primarily confined to the right side of my body, head to toe. Coincidence?

Not sure. My twitching is wide spread though. Head to toe. I also tested high on the provoked urine test for lead as well. Hoping to get another EMG and or muscle biopsy soon and see what that yields. If it doesn’t yield anything closer to an als Dx, then chelating may be in my cards. Have you had a heavy metals urine test?

Im doing a hair test for metals havent found a way to get the urine test yet. But im curious to see what comes up. Interesting about the right side..... Man I hate that you or anyone would have to go through what youre going through it sounds absolutely torturous. I am
Just starting this journey out and still hoping it just magically disappears.

But Im sure you were probably at that point somewhere early on as well. So you had twitching then perceived weakness then atrophy?

Yes. I really thought a few months in that this was going to be nothing and would go away, especially after my first two EMGs were totally clean and the docs said I was good to go. But, things didn’t get better, only worse. Then EMG 3 was dirty in one muscle, then EMG 4and 5 dirty in several muscles. Yes, it was exactly that order. The atrophy wasn’t apparent for a while, about 5-6 months