ALS Support Community

Thanks mate.
I've had some progression in symptoms. And beginning to feel weak, so I'm not feeling to confident about it this time.
I'll keep you posted.

I haven't gotten the results but was told it's abnormal again, but not tracking like ALS would. My symptoms have confused him.
"I can't say in 12 months it's not going to be MND, but right now it doesn't appear to be."
Relieved of course... But still no answers. I asked about PMA and how I've read it could be missed. He said, maybe yes, most likely no. Genetic
testing, muscle biopsy and lumbar puncture next.

Im sorry you still don’t have answers. I’m sure it’s real mixed feelings for you right now, given that you don’t have ALS/PMA today and feeling relief, but then the frustration/anxiety of knowing something’s really wrong and still not having answers. Glad this guy is moving ahead with trying to figure it out via genetic testing, lumbar puncture, and muscle biopsy versus making you wait and saying

come back in six months for repeat EMG.

My Kennedy’s lab came back yesterday and it was negative. That’s one more thing to cross off the list.

When your EMG report is available, posting it here in the dihals forum is usually helpful as several of members are really good at interpreting them and giving feedback.

I have read several articles saying that PMA, on average, takes 20-21 mos to Dx. Only about 4-7% of ALS cases present as PMA. So, it’s a very rare onset type to an already very rare disease. Please keep me posted on your progress, testing etc and I’ll do the same. Again, when one of us figures this out, it may just apply to the other, as our symptoms are very similar. Just know I’m here as well

if you ever need to just vent or correspond with some experiencing similar stuff.

Thanks mate!
Sorry your results didn't go as u would like.
I'll keep u posted as well. I'm lined up to be admitted to hospital next week for a few days of testing. I am not hopeful of getting and clearer of an idea, and of I do not sure it will be good news. I'm convinced on PMA as well.

I am well aware we are 1 millions times better off than everyone on this site. But that being said, this has completely ruined my life.
We need to find an answer!!

I have gone through a few people with similar stories as ours, they either end in PMA, or haven't been back online to post which also has me in 2 minds of there ultimate diagnosis

I totally hear you man and feel your pain 100%. I’m very glad they’re admitting you to the hospital. Hopefully that will sped up the process of getting this figured out. These docs here with the come back in three or six months, let’s wait and see or do a test, come back in 30 days, do more tests then come back again. This is killing me, while I just slowly waste away between visits with no answers.

Thanks mate.
Yeah hard hey.
Had a bad bad day today.
I've actually started to notice weakness in my limbs the past few days, so thinking I just hadn't noticed it earlier cos it was subtle.
Hmmm.

And my chest has been quite sore, doc the other day said my 02 saturation was low.
Soo maybe I might be getting the answer I don't want a lot earlier than I thought.
Its hard, cos we know what we know about our bodies, and sure of what's wrong, all we want is an answer, but what we don't want at all is the bad answer.

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