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,… 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… 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… 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… 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… Read more

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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… 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… 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) … 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… 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… 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… 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… 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… Read more

This is infuriating. My chest tightens reading and thinking about your problems and lack of care.

I keep telling myself (and others) that I have real weakness and have to adjust my life around those limitations.

I also have anxiety because my care has been blatant malpractice. I finally am developing team that I trust and can communicate with… Read more

Update.

I got a note back from neurologist and she agreed that it is hard to untangle symptoms and we will try to address neuromuscular first.

This is the correct answer.

I also had 1st meeting with a psychologist and he was empathetic and attentive. He admitted the Neuro was out of his realm but we can work on the emotional chaos.

Again… Read more

I am trying to be optimistic, but first visits are often ok. It’s the follow through that matters.

Often, taking control is seen as Dr shopping or worse Dr Google.

Its hard to break through the stigma but Cleveland Clinic has the best culture and work ethic I have seen.  They are much better at communicating and access to medical records. … Read more

I got the kids back in school and activities, finally have some quiet to regroup.

Fired my medical providers, it was kind of mutual and organized a new team.

I am now only going to go to Cleveland Clinic except for local PCP. My first visit went well but they were clearly confused by my medical records because they are a disaster.

Needles!!… Read more

<p style=”text-align: left;”>I had long consult at the neuro-muscular clinic and Cleveland Clinic yesterday.</p>
The first thing the resident said was “wow, you have a chart.” I said yes it is a mess and we talked extensively about it.

Then, he gave the most organized and complete Neuro exam I have ever had.

Surprise! It confirmed everything… Read more

Carol, I was concerned about that because I have dangerous reflux and esophagial weakness but there must be something in the processing that makes it unlike a standard herb/spice.

 

I have been taking Theracurmin.

It without a doubt changed GI function but I don’t sense any direct neuro-muscular effects.

I will keep taking it (less frequently) because any improvement is good.

 

The exceptions often prove the rule itself needs to be reconsidered.

https://www.ncbi.nlm.nih.gov/pmc/articles/PMC8151104/

Until established test it doesn’t exist and even then…

It took me well over a year to get the full MG blood panel. My mother had MG and it should have been fully tested on the first visit when I complained of jaw weakness when eating.

Ordering tests is point and click.

 

IMO it is so hard to diagnose because modern medicine is nearly 100% dependant on technology.

Doctors are losing the ability to do physical exams and don’t take the needed time to do histories.

Research shows they are not great at testing reflexes if they even test them at all.

In all my exams only one Dr ever tested the jaw jerk reflex, only… Read more

As I mentioned in another post, acupuncture and energy medicine doesn’t and really can’t conform to western diagnosis.

If you go a skilled practitioner, they will feel your energy/pulses.  You feel where there is too much, too little, out of balance and treat to bring into balance.

You assume that will relieve symptoms improve… Read more

Note to moderators.

I know trying to help people over forums is problematic, sorry if inappropriate. I can’t imagine thinking ALS when it was an unfortunate complication.

Cranial nerve palsies are a rare complication of spinal anesthesia. Most of the time they resolve by themselves or with interventions.

However, sometimes… Read more

I am going to assume after 20 months, Drs have ruled out stroke, tumor, Lyme, viral syndromes….

And the question is it non-progressive bulbar palsy or bulbar onset ALS.

Are those  correct assumptions?

Unfortunately ALS is known by time and exclusion.  Hang in there but don’t just wait and see until after every thing is ruled out.

It took… Read more

Yes the tasty stuff and x-ray is the same.

I suspect a large survey would show the same thing, no PT and SLP dropouts.

Here is a video, don’t watch, just listen to it, don’t even try, just listen, if your tongue is fasciculating, just feel it against teeth.

I don’t know your range and ease, but allow you tongue to rest in a spot and… Read more

In my continued efforts to see what support people are receiving, has anyone been introduced to exercises of the sphincter muscles. I know the line of “these are not effected” but I had swallowing test under fluoroscopy which showed weakness, esophagal and Pharyngeal. If my pelvic floor muscles were tested, they would show weakness as… Read more

Jim gave an excellent professional legal view.

When I have helped the dying, I asked questions and listened.  What do you think it will be like? What is your view of afterlife? What do you need? Who do you need to be with? Any people you need to reconnect or reconcile with? What can we do for you so you are supported?

I know what I would… Read more

Amanda asked this in April and 4 months later there is a wave of media stories.

I want to watch the Ady Barkan documentary and the stories of Chris Snow are inspiring to me.

There is also a documentary about Selma Blair and her life with MS.

How do the celebrity spokes patients make you feel? I have very strong and mixed emotions about what… Read more

Trevor,

Your path is very similar to mine minus the genetic testing.

I think with greater awareness comes more people and an greater understanding of the chaotic nature of the disease. There is this history of an adherence to a rigid linear path and presentation.

I remember early in my career I treated a desperate woman that was diagnosed… Read more

Lisa,

June 5th was too long to wait. Talk to the doctor who ordered it, but I would ask to get a referral to a Pulmonologist (assuming that it was ordered by someone else)

 

 

Bill, sorry about the falls.

There are good PTs that are skilled with balance and fall prevention. Most of them work in-patient Neuro rehab units.  While it is a little “off label” many hospitals have vestibular rehab programs.  I would also seek out PTs that work with Parkinson’s patients.

 

Bill,
<p style=”text-align: center;”>I have generally had the progressive week after week weakness and then just in the last two weeks my fingers just stopped.</p>
I am testing strength every day or so and don’t have great expectations of improvement, but I do know with me repetitive movements with resistance are not helpful.

I recently had… Read more

I wrote Dr B over 2 years ago and he responded personally and I intend to try to connect with him.

I worked professionally with a number of acupuncturists and the important thing to know is there are many different styles and nuances and with all physical intervention it is VERY dependant on provider.

It is what makes research so difficult.… Read more

In general you are correct about the movement being based on functional intentions.

However, because of extreme training over the course of 35 years, I developed refined ability to activate/effect specific muscles or physiological functions.

When I was 16 I was in a biofeedback study.  I could control things like surface temp, heart… Read more

Thanks for the encouragement.

There is such a disconnect between from a pure neuro-physiological frame work of what “should happen” and what is clearly happening.

I try to look at myself as a person I am treating. What would I do if I walked in?

For example over last week, with my left hand palm down I can’t  spread my fingers. If I really… Read more

One of the things I have noticed about some of of the higher profile people with ALS in the news lately is they have used their skills to become intense advocates for a disease the might not have ever thought about until it snared them in the web.

It is inspiring to me. My skill prior to my current state was neuromuscular rehab using a… Read more

I had my NCS/EMG today.

I like my new Neurologist. He is clearly skilled and compassionate.

This one felt different, it wasn’t as intense, I don’t know what that means but I do know I couldn’t activate the muscles as I could 18 months ago.  After my leg was needled, it visibly fasciculated for 5 minutes.

Now I have to wait 3 weeks for… Read more

Dagmar,

I was looking for something else and ran across this.

One of the things that I practiced at University of Pittsburgh Medical Center was the Feldenkrais Method.

I am going to “flex” while I still can and boast. I was one of the best practitioners ever. The last treatment I gave was a couple of years ago, I had to quit when my… Read more

John, thank you, I can’t tell you how helpful this is.  About a year after first EMG, I finally got appointment with amazing Neurologist, (he moved and semi retired that month) that was certain. But the EMG was done by top MND specialist.  At the end he said coldly “it’s not ALS maybe LEMS” and walked out and wouldn’t even answer any… Read more

I am in this situation, so hesitant to post, but I have reached the 95% confidence level.

Briefly, my first neurology visits were 2 1/2 years ago and first signs of weakness 3 1/2 years. I realize this would be a long duration onset.

I definitely present clinically with ALS and everything has be “ruled out” (including ALS until my next… Read more