MupstateNY's thread

[MupstateNY]

Thank you, Nikki.

To be honest, I don't completely understand my journey to dx. I showed my weak thumb to a neurosurgeon I had been sent to for my back problems, and he ordered several tests including EMG. The neurologist doing the EMG in July said he suspected ALS, and started putting "ALS?" on my paperwork. He booked me for more testing in September. That's when he requested a copy of my lumbar MRI to see if spinal stenosis could be the cause. I got the impression he wasn't diagnosing me yet because he needed to see progression. I was certainly experiencing progression, in my voice, my hand, my leg strength, my gait. I had a lot of back and ankle stiffness in the fall, too. In mid-August I started getting twitching. I've been trying to understand why it took 4 months. Maybe it's because my signs and symptoms were kind of subtle in the beginning.

I guess I was lucky that I wasn't sent down a lot of dead ends (wrong type of providers) -- it could have taken even longer, I guess.

Does anyone know what the current average time to dx is (I guess it would be from the start of symptoms)?

 

[affected]

Might be best now not to hijack this thread further. The OP have their own valid concerns.
You can start a thread for PALS and CALS to discuss this if you want in the general section Mupstate

 

[ShiftKicker]

Tillie has made a good recommendation- I have moved to a new thread. We try to keep the Could This Be..? threads as on topic and focused on the original posters' questions as we can.

(thread redirected from here)

 

[affected]

Thanks Shiftkicker!

There isn't an average time that makes sense as there are so many variables.
It's like asking what your progression will be like.
In hindsight you can say, oh I progressed like this or that person.
But beforehand we can't tell.

I didn't realise for quite some time that my Chris's first symptoms were actually the FTD starting, not the ALS. I didn't even know about FTD until well after the ALS diagnosis! Of course since a classic FTD symptom is that they do not know anything is changing, he had no idea of these early symptoms either.

These are great conversations but because everyone is so different, and areas of onset and mix of UMN and LMN all play a part, let alone progression speed, it doesn't equate to more than interesting.

And that is all talking only about ALS, because PLS and very UMND do take years to diagnose, in part because they don't show EMG findings.

 

[ReginaS]

For us it was pretty fast path to diagnosis once Tom had foot drop. He had been to GP and pulmonologist before to find the cause for changes w voice / hoarseness and they guessed GERD, asthma…. but pulmonologist already advised neurologist. Tom changed GP at the same time and the new GP got him an EMG quickly and he was diagnosed the same day - it was an ALS specialist who saw him after EMG. Tom had rapid progression… might make diagnosis easier.
The diagnosis was hard. There is nothing easy about it and it takes time to digest. We still had wonderful times…and sad times.

 

[rmt]

I find there are two kinds of people who come to this forum. Those that are sure they have ALS, and almost never do. And those that are desperate to have us tell them they don't have ALS. Those are the ones who do end up having ALS. I was in the second group. I so desperately wanted people here to tell me that my husband didn't have ALS.

I'm not an expert, but it seems like once people see a neurologist, if ALS is in the differential, they know it. And as long as they weren't the one to suggest ALS, then it is an actual possibility. But if the patient has suggested ALS, then things drag on as the doctors try to cover their butts and order lots of tests. Those that suggest ALS to the doctor seem to almost never have ALS.

 

[affected]

RMT you are spot on.
For months Chris tried to pretend nothing was wrong, and to be honest I didn't realise there was anything physically going on because I was aware of the FTD changes and more concerned about them.

When he first told me of the physical changes I was sure it was nothing. We never put together the symptoms as relating to each other let alone anything sinister.
Even when friends and customers were asking me if he was drunk and how strangely he was behaving we were in denial (he had EL as well so his staff at work were really worried at his uncontrollable, hysterical laughter)
Finally we started investigating, but it was only about the speech at first.

I found out part way through the diagnosis process that inside, Chris was terrified that he had a brain tumour as he lost his first wife to cancer that spread the brain when she was very young. But we never went to any doctor saying do I have a brain tumour. It was after the clear brain scans that he told me that it had been worrying him.

 

[MupstateNY]

Thanks for splitting this off. After I posted I felt kind of bad about the hijack. This seems like a good solution.

I looked at some journal articles this evening about diagnostic delays. In discussing what I found with my spouse, he pointed out that I really pushed to get a dx as soon as possible. Here's my timeline:

- May '22 - first noticed some weakness in R thumb (about to turn 67)
- June '22 - Mentioned the thumb issue to a neurosurgeon when I was seeing him about something else, and he ordered EMG
- Got first EMG in July, was told I had ulnar entrapment and suspected ALS
- Late Aug - went to ALS Center, told categorically no ALS (but I felt that first neurologist took the time to get to know me better, and I gave his opinion more weight; but inexplicably I was scheduled for EMG at the Center in Nov
- Sep - More testing (requested by neurologist) - legs showed some problems; neurologist asked for copy of my lumbar MRI to see if that could explain my symptoms
- Nov 16, '22 - dx at Center

I noticed leg weakness increasing week by week so by Nov I just wanted to end the uncertainty.

In retrospect, I pushed things along in several ways:
- mentioned thumb symptom not long after I started noticing it (had no idea what it could be due to)
- went 2 hours away to get an earlier EMG
- I actually rescheduled my Center EMG about 3 weeks earlier than originally planned (I think I said I wanted to avoid snow season)
- I scheduled a swallow study for Nov 17, thinking that if my swallowing problems were documented, that might push my neurologist to go ahead and give me a dx to put me out of my misery of uncertainty

Also, I was lucky with the choice of neurologist I saw (two hours away). Even though many of my changes in July were rather subtle, he took all my observations seriously.

I wonder if my multiple compression fractures of the spine were a factor in my developing ALS. Also, I was hospitalized in April with dangerously high calcium (side effect of an osteoporosis med I started in Nov, '21, and I wondered whether that could have been a factor. Now I think not because I read that the disease is already cooking for some time before one notices any symptoms.

From my forum reading, I'm thinking that a late dx can be extremely stressful for PALS and family. I'm glad I had from July to Nov to get used to the possibility, even though the uncertainty was hard to handle.

The interest so many of us seem to have in remembering our dx process, and comparing notes, reminds me of my post-partum group in Denmark. Everyone does them there. The leader strongly encouraged us to tell our birth stories. (Many of them traumatic to at least some extent -- even though childbirth in DK is supposedly quite enlightened.... Let's face it, giving birth is just plain hard for a first baby....)

 

[affected]

I don't now of anything that links compression fractures to ALS.
My Chris had never had any serious illness or injury. He had never been admitted to a hospital in his whole life.
He did not even know what blood type he was, would you believe it.

It is interesting to compare, as it helps to show just how different every PALS is and why no links have yet been found to causes for SALS.

 

[Tomswife]

With Tom. The question of when symptoms start is tricky. There is the start of symptoms that send you to a physician. For Tom that was March 2022. Then, AFTER dx in August, there is the recollection of symptoms earlier. Those symptoms are less obvious and persistent. One was Tom crying watching a movie in December 2021. Tom is not a crier. And working on the playroom for the grandchildren, he had difficulty holding the power drill. We did not have a sheet rock drill so i went and bought one. Then I watched YT videos on drywall screw drilling. !!!

 

[MupstateNY]

I guess compared to Tom I'm pretty quick to mention symptoms to doctors! My mother called me a Princess on a Pea, hothouse lily, etc.