Diagnosed but not Convinced

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New member
Mar 28, 2023
Hello to everyone. I’m a 50-year-old US-expat living in Australia. After 6 years of symptoms, I was diagnosed today with MND, but I’m not convinced that I have it. I will try to be as succinct as possible as I describe the last 6 years leading up to today.

in 2017, I woke up on a Monday to discover that my left middle finger was very swollen and painful to touch. I couldn’t bend it at all. 3 months later, my left ring finger did the same thing: swollen, painful, and hard to bend. 3 months later, my left pinky finger did the same thing. I went to the doctor, who referred me to a specialist, who did tests, scans, and so forth. He concluded that I injured the fingers while playing soccer. I thought to myself, “No way.” Long story short- my three fingers eventually healed (but not completely) about a year later. However, all 3 fingers are now thinner than they used to be, and I have to wear my wedding ring on my middle finger; if I wear it on my ring finger, it slips off. I can still play guitar, but I had to change the way I play to accomodate my affected fingers.

The same time this was happening (2017/2018), I started noticing that my speech was a little slower than it used to be- especially on the weekends after a long work week. At first, I chalked it up to fatigue. I mentioned this to the family doctor, but she said she didn’t notice that I was talking slower. However, by the time the pandemic began (early 2020), my wife noticed that I sounded tired and slow when I spoke.

Also, I had the good habit of running 5km nearly ever day. But towards the end of my runs, I had terrible soreness in my lower left leg. My Achilles, calf muscle, and the back of my knee would be very sore afterward. I would ice it down, take the next day off, and try again the following day. But the soreness remained. By the beginning of 2021, I began to notice that my right foot would strike the ground smoothly while running, but my left foot would hit the ground hard and flat. Finally, one day at the end of my run, I tripped over my toes and hit the ground hard, skinning both knees and an elbow. Needless to say, I stopped running and haven’t run since.

I was referred to a neurologist in 2020, who ordered an EMG test, which came back normal. As my symptoms worsened, he raised the possibility that it could be MND (in Australia, MND is usually the term they use to describe ALS). He gave me another EMG test in May 2021- again normal. The next EMG test was in February 2022. He found an “abnormality” in one limb, but not the other three. He said it’s “probably” MND. I asked him if meant ALS and he said “yes”. But he didn’t diagnose me at the time because he said too much of the EMG came back normal.

I decided to seek out a second opinion and booked an appointment with a neurologist who is renowned for his Parkinson’s expertise. He ruled out Parkinson’s at the exam, and performed an EMG that same day. It came back normal. He ordered an MRI of my brain and spine to check for MS- and it came back normal. On his report to my family doctor, he said there was no obvious evidence of MND/ALS, which was a relief.

I had yet another EMG with the original neurologist in February 2023. He wasn’t as thorough this time. He only checked two of my limbs. When he found what he thought he was looking for, he (abruptly) ended the EMG. My family doctor said the report was “normal” but there was a note at the bottom that said something like “evidence of anterior horn disease”.

Today was my quarterly visit to the neurologist. I didn’t see him; he sent one of his understudies to give me an exam (strength tests, reflexes, etc.). He said I’ve been diagnosed with MND. I said “do you mean ALS?” He said “not necessarily. At this point it’s only the upper motor neurons that we are diagnosing.” I said, “So… is it PLS?” He said, “Time will tell what this is.” I replied, “So you’re officially diagnosing me with MND today?” He said, “yes”. I thanked him for his courage. We wrapped up the visit and headed home.

I haven’t lost any strength, but my balance and coordination are not great. A physiotherapist is giving me excercises to improve my balance, and they are slowly (but surely) working. I feel more confident when I walk. I used to work out 3x per week using dumbbells, but due to my wife’s concern about my balance, I switched to body weight exercises. I started doing push-ups in November. I could barely do 1 push-up a day back then; now I do 3 sets of 9 pushups every other day. On good days I can do up to 12 push-ups in a row; when I’m tired I can still do 9 push-ups for the first set, and at least 7 on the 2nd & 3rd sets. My left arm and leg are not quite as strong as my right, but isn’t that true of most people?

I re-kindled my love for the guitar back in August. I set up a metronome to see how fast I could play. I could play a scale of eighth notes at 60bpm- slow but consistent. By December, I could play that same scale consistently at 155bpm! (I even recorded them for posterity.) It’s March now and I’m learning new songs and playing old ones. I was never Eddie Van Halen, but I can hold a tune well and even play some simple solos.

Does that sound to you like someone who has ALS? It doesn’t to me. But maybe I’m wrong.

Not to mention I also do 60 lunges (30 for each leg) every other day. This afternoon I was able to stand on my toes (calf raise) and maintain my balance for a few seconds. I’ve been visiting this forum for months but only registered today because of my situation.

Can a person who has PLS do these things?

Does anyone have advice as to where I go from here?

I’m a native of Phoenix, AZ, and they have a Mayo Clinic there. I definitely want to pursue another opinion, either here in Oz or in the US. But before I tell my family there of my diagnosis, I wanted to get your thoughts. Thanks for any help, suggestions, and wisdom you can give. Take care.
We always advise a second opinion on any life-altering diagnosis. PLS, ALS, or any other MND qualifies.

From what you've said, not sure I would rush to inform people until the second (and third, if necessary) opinion. You might, rather, if asked, note that you are going through a diagnostic process.

As you probably know, PLS doesn't progress as quickly or severely as ALS, though like ALS, it manifests in different ways. The short answer to your question is, yes, it's possible. I'm unclear what criteria were used for the diagnosis, so I really can't comment on probabilities overall. But again, that's what second opinions are for -- to see what lines up in someone else's judgment, who can review all the evidence, gather more if needed, and make an in-person exam.

Laurie, thanks for your quick reply and your good advice. We lived in Burlington, WA, from 2004-2009. Our son was born there. We miss the Pacific Northwest. I’m sorry that you lost a loved one. A friend of mine from Phoenix lost his battle with ALS in 2021.

Kind regards,
Agree with Laurie. It doesn’t sound like you have seen an MND specialist? you certainly have them in Oz so i would seek one out.

It is certainly true that when you have upper motor neuron findings only and other causes are eliminated the diagnosis can be MND possibly PLS but with upper motor neuron dominant ALS also in the differential so what the last doctor said sounds correct if the diagnosis was properly made.

the bit about the emg being normal but showing anterior horn disease does not make sense and I would ask for the report if I were you.

I am sorry you are dealing with this but glad you are functioning so well. The general advice for PLS is keep as active as possible. Different than ALS where some activity is encouraged but more cautiously

please let us know what happens

That's a lot. Anterior Horn disease is just a big umbrella doctors use when they refer to all the motor neuron diseases. From what you describe of your EMGs, I don't see how they came to that conclusion without solid clinical presentation. From the description of what you can do, very few people with PLS or ALS can do these things and you've been having symptoms for six years.

I would definitely go to a neuromuscular doctor as soon as you can get in, whether that is in OZ or the states.

I'm sorry you're going through all this but your gut is right in that you need another evaluation from a neuromuscular doctor, maybe two.

I'll be interested in learning what the neuromuscular doctor thinks. Make sure you have copies of all your tests and doctors' notes.

I'm hoping for the best.
Thank you too Kim.

I’ll post again when I have more information. It could be a few weeks. Until then, all the best :)
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