Mark S

Als forums and dx

I want to thank people here for really helping me out by chatting and reading your stories.

Most forums across all patient sites are disease specific, like medical clinics, which has advantages because of specific knowledge and experience. The disadvantage is it is often not that easy. Either people are undiagnosed, have…[Read more]

Carol, my possible ALS, 5 EMGs later, has been down graded or is it upgraded to, we have no idea. My problems are almost entirely upper motor neuron. PLS dx guidelines state you have to wait 4 years with no LMN progression.  I have LMN symptoms but no EMG evidence.

On EMGs, they are good at detecting nerve damage, which I don’t have. So no…[Read more]

When I started having cramps, fasciculations and weakness, that is not what I was complaining about to doctors.  It was the exhaustion, I would fatigue within minutes of any effort, I couldn’t think, over the last months I was sleeping 2–3 hours during the day and all night.  I was not awake for the last 2 years.

I finally got a new PCP that l…[Read more]

Sorry for your health and frustrations. I am in same situation. I gave up on answers and shifted focus to finding doctors that listen and try to help when there are currently no good answers.  Symptoms can be treated without certain dx, it’s hard to believe but Drs can do that.  It only took me 3 years Thankfully I found people and I am doing s…[Read more]

I’m curious if anyone has had a doctor mention abnormalities on brain MRI as part of diagnosis or follow-up.

You would have heard something like (T2 FlAIR hyperintensities).

There is a literature on neuro-radiology and motor neuron disease but it doesn’t seem to be utilized.

So sorry Leslie,

I don’t think there is a correct answer here.  Often anxiety is positively effected with information, often not knowing is worse that knowing a negative thing.

Other times it is not helpful.

I never had anxiety but developed it over the past year. I am working on it with a therapist. I think I’m ok without medication but would…[Read more]

https://investors.biogen.com/news-releases/news-release-details/topline-results-tofersen-phase-3-study-and-its-open-label

Just to be clear.

I know people have strong opinions on ALSA and others, mine are complex which is why I generalized my comment and should have said I try to stay out of discussions about all the organizations.

I do try to share what I think is good clinically.

Agreed in that I have little good to say about disease awareness organizations and their basically taking commission on fundraising.

However, so many people including doctors have a terrible time with early stage symptoms and testing.  This is a pretty good tool to say, uh, I should be followed closely.

For me everything is ruled out. The only other theory some have is it is psychological, Functional Neurologic Disorder, which is a legitimate concern but not reasonable in my case.

I like what ALS Assoc did here with the screening tool in trying to speed up dx.  https://www.als.org/thinkals/thinkals-tool

Individuals, patients, family and providers all have a large range of desires and biases.   Medicine has tried to deal with this by creating first anatomical system specialists, like neurology and then sub specialist by disease.  While there are some disease specific more integrated clinics, they are rare.

Each clinic and hospital has its own un…[Read more]

It’s my experience that Hospice and Palliative care professionals are the best of the medical community.

Services are still misunderstood and underutilized. I recently saw people on Twitter jumping on an ALS chapter for hosting talk on end of life planning.

It makes me upset that there is a segment becoming more angry because they feel there is…[Read more]

I don’t like being active for 30 minutes breakfast, much less a LP.

Is that part of protocol?

That is a lot of lumbar punctures.  The old protocol was to lay flat for a while and limited movement for a day or so.  It was thought to reduce risk of CSF leak, or low pressure headaches.

Meta research shows that advice doesn’t have any data behind it.

That said, my advice is take it easy, try to rest (don’t be quick to get off the table)  an…[Read more]

When I was a treating people, especially when treating a person’s head/neck I would know it was working because I would get a single tear or two.  An empathetic sign of release.  I never really cried even when with a dying person.  I felt I had to maintain that equipoise and it was not hard.   I really only wept when my mother died in my hand…[Read more]

Thanks.

I do think there are meds that help, but Drs won’t treat symptoms. And I worry care will get even more delayed if symptoms are less.

I was taking zanaflex for muscle spasms but didn’t like the side effects. They wouldn’t try baclofen after I quit.

There are multiple possibilities for treating fatigue and I’m on nothing.

I know it’s a…[Read more]

First Neuro visit was 3/19 for weakness and falls and fatigue.

First possible ALS was 11/19 after fasciculations started.

12/20 I had voice/swallowing and aspirated.

This next EMG will be #5 and the last. I’m done.

When I look back, it’s been almost 4 years. I tried taking CBD for my jaw 4 years ago. It fatigued when I ate. I thought it was…[Read more]

Blood tests?

I am in very similar combination of symptoms with no certainty.  GERD, swallowing weakness, fasciculations, cramps, weakness.

It seemed like upper motor dominant ALS, and now some muscle atrophy in hand

Hang in there. The lack of clarity is rough.

You can have pre-existing conditions that will complicate but not be caused by or be a presenting symptom.

As you probably realize swallowing/reflux is looked at multiple levels from tongue to esophagus, I have some  weakness across the whole system and some Drs say it is not “enough” to be certain or even neurological, others think it might…[Read more]

Jerry,

I read this many times and thought about what to say. That’s a complicated history.

My opinion is when experts do work ups multiple times for MND then it by definition looks like MND.

Is it or is it something else? You have to keep looking because there may be something treatable. Or you need clarity on MND.

There comes a point where…[Read more]