Clinically probable ALS

[Mtzu]

I've been told by a MND specialist at UCLA that I fit in the probable category in the diagnostic criteria. Does anyone know what percent that is? Is it like 60% or 95%? I guess I'd like to know the odds of what I'm dealing with.

Thank you.

 

[Nikki J]

The question you need to ask your neurologist is : is this probable ALS by the diagnostic criteria? Or is it maybe ALS? World of difference
Did they give you riluzole?
It is horribly confusing but the diagnosis of probable ALS by criteria basically means you have ALS but it is in fewer areas than what they call definite ALS. But probable ALS will get you into clinical trials.
If it is maybe ALS then there is still a good chance of something else
I am sorry. This reads pretty brutal but I don't know how else to say. Call and clarify. This is too important not to

 

[Mtzu]

Thank you Nikki.

The Dr. did not start me on any medication. If "probable" will get one into trials than that sounds like it's on the very high side. I will look to get clarification.

 

[lgelb]

The "by the book" probable criteria are on line. If the neuro is going by those, there is a high likelihood.

Nikki is right -- call and ask, "Are we proceeding under the assumption that I have ALS?" If so, there is a checklist. If not, the next question is "What/when/how will we rule out mimics?" There could be features of your exam/tests that suggest certain mimics but that is what you should find out.

 

[Mtzu]

Igleb, Thanks for the insight.

My last visit was with an MND specialist so I suspect they are using the above mentioned criteria. They have done a couple of tests to rule out mimics. They have each come back negative. When I asked the doc what are the different things we might be looking at going forward she told me that I either have ALS or BFS. The later being unlikely with the bad EMG, evidence of UMN issues and some clinical weakness.

Per your and Nikki's recommendation I'll contact them to find out what assumptions they are working from.

 

[Panos1978]

Hi Mtzu,

I am really sorry for the outcome and i really hope that this can still be something treatable.
I read your posts from the beginning and honestly i was very panicked as i'm having similar issues (regarding the twitches).
My issues started 13 months ago.
Could you please tell me.
Over these 2 years were your fasciculations constant and continuous? Especially in your right arm where it started?
You didn't notice any weakness or atrophy in any part of your body?
The first doctor who performed the EMG did he totally ruled out ALS?
Your twitches started in the right arm but you mentioned that the doctor found your left arm slightly weaker (which could be absolutely normal). Is your right arm still fully strong?
Have you performed an MRI to check if those fibs and PSWs may be coming from some spinal issues?

Again all the best

 

[Mtzu]

Hi Panos1978,

Sorry for the late reply. I've been traveling for the holidays and seeing as much family as possible.

I will go down they line of questions and answer the best I can.

As for my fasciculations I remember thinking in November of 2012 that my muscles twitch a lot. They had be twitching for quite a while by then. At this point they are all over my body. They very by frequency and how hard they twitch.

The only weakness I noticed before this all started was in one range of motion in my left hand (pinching) but I have damage there from an accident descending down a mountain. But, during the neuro exams they found a couple of more places in ranges of motion that I just don't use. When asked to resist pushing my left thumb toward my hand and my right pinky toward my hand I had a hard time doing it. I was surprised but immediately realized something was wrong.

The Dr. that did the EMG seemed very concerned at the end or that appointment. I've always been a straight shooter so I asked her if it is likely that I have some kind of neuromuscular disease and she answered "yes". I followed by asking if I do is it likely that I have ALS and she answered "yes".

My arms seem to have good strength for now but who knows what the future holds. I go back to the MND specialist in the middle of February for further assessment.

They did a cervical MRI and it came out normal. So, nothing there.

I hope all turns out well for you. This is a crazy journey to say the least. I feel real lucky to have found this forum with so many knowledgeable and compassionate people on it.

Good luck,

Michael

 

[jessmaja]

Mtzu, how old were you when your symptoms started? Wishing you all the best.

 

[Mtzu]

Hi Jessmaja,

I was 52 when the muscle twitching started (55 now). At that point I just wrote it off to the super hard conditioning I was doing. I waited till last August (54) to get a referral to a neuro. I saw the neuro in Oct which is when they found some weakness in my hands and I got the bad EMG results. So, I don't know if twitching does or doesn't have anything at all to to with the other things.

Good luck,

Michael