ALS Support Community

I couldn’t have said it better myself. It’s all so very frustrating for sure.

I haven’t had any full blown cramps yet, but am experiencing these pre-cramp tight feelings in my right calf now where my atrophy is the worst. I don’t think that’s a good sign.

In your research, Have u found any cases at all where they have had similar symptoms and been alright??
I'm battling to find anything.

Ya. Not so much. Most of what I’ve read about atrophy, twitching, hyporeflexes and no upper motor neuron signs is usually PMA and in rare cases MMN, but I have tongue twitching and swallowing issues, which MMN doesn’t impact. I have an appt with an ENT Wednesday. Hoping he can scope my throat to see what’s going on there.

Yeah no good. My tongue has had fasiculations from day dot and is very weak.

Good luck with the ENT.

Hey mate.
Commented on arrans message. But I'm on the verge of getting the official DX.
Devastating.
I think I've progressed super rapidly.
So u guys keep faith, cos it seems at least whatever u have is going slow. And theres hope it could be something else.
Sorry I could bring good news

Man, I’m really so sorry to hear that, Mike. I just sent a prayer your way. I’m still hoping there can find something else other than ALS. Hopefully your EMG reveals otherwise tomorrow. There was a guy here on the forum, SWSKelto, and docs told him they were 80% sure he had als, and he went to the Mayo Clinic and they discovered he had a weird variant of CIDP. Furthermore, I’ve been going through

this battle and researching like a maniac for almost 19 mos now. Even if this is, worst case, als, which I’ve been preparing myself for, there is, for the first time, In the 150 years of the disease, three promising clinical trials that have shown to slow or stop disease progression and one has even reversed some symptoms. The most promising is NurOwn which is scheduled to finish phase 3

trials in about 6 mos. I bought stock in the company it looks so good. I talked to a guy yesterday who’s in the trial and got his first stem cell injection last week. He said a good majority of his twitching has stopped. There’s a drug called cuatsm which is currently in trials there only in Australia and they say in the previous trial it slowed disease progression by about 70%.

Lastly, there’s a procedure called TREGS here in the US that just started phase 2, but in phase 1, the procedure actually stopped the clinical progression of ALS for the first time in history. So, stay strong and keep up the good fight. Even if this is ALS and I continue to pray it’s not, there are some hopeful als treatments on the horizon for the first time ever in the history of man.

Hey Mike, how you doing? Did you get any diagnostic clarity from the docs?

Hey mate, stupid question, but how's things?I was reading earlier that u were once looking down the root of maybe going on TRT?
Do u end up following that path??

It's next to impossible to get a prescription in Australia, but just a thought if I keep progressing with no more ideas from the neurologists

Hey Mike, things are not great. Wish they were. My atrophy continues to worsen. I was thinking about TRT and even got the script from my doc for it and all, but never started it. If by some miracle I don’t have PMA, I still want to have children and TRT can screw up that possibility. So, I’ve been fighting real hard for a Dx, but no luck yet. My new neuro wants to wait till June to do EMG #6.

If I find out I have PMA, TRT is one of the first things I’m going to start, as the thought of children goes out the window and just slowly progression of the PMA becomes #1 priority. Yet, why waiting for a Dx, I sitting here and feel my muscles just melting away. It’s all so frustrating. You can look up a guy called Nadir. He has a website called Nadirs ALS Remission Protocol. He claims to have stopped

the progression of his ALS and gives the things he was prescribed by the doctors to make that happen, and one of those things was testosterone. It’s worth a good look. If I get a Dx of PMA, I’m going to have my integrative doc start me on all the things Nadir was taking.

I feel like you practically have to be in a wheel chair in the US to get a Dx.

How you holding up?

Hey mate,

That's interesting. I'll have a look at that website.

Yeah I'm battling hard, muscles are getting smaller and smaller and more limp. I hadn't seen my mates for about a month, we caught up yesterday and they were absolutely shocked at my arms and hands a legs. Pretty much shocked beyond belief at what I look like now.

I was thinking the same with kids and stuff, but now I've had enough, so thinking of maybe trying to do what I can now before getting to that wheel chair stage (if ever that were to happen).

Like I saodz it's just super hard in Australia to get a prescription.

I do have low testosterone, so figure it could only help

Sorry to hear you continue to get worse and that it’s hard to get TRT over there. I have low normal testosterone ranges here too. I’ve tested six times in the last 2 years and I’ve ranged from 232-421. I’m 42 years old though, so I should be in the 600+ range. I just tested again Friday and am waiting for the results. I’m almost to a point health wise that I’m willing to try whatever, even if that means no kids.