New thread- Concerns about symptoms aligned with Bulbar ALS/MND

BeckyB

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Joined
Jul 4, 2022
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Learn about ALS
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Hello PALS & CALS,

I posted here in July 2022 after experiencing a range of concerning neurological symptoms. Could this be Bulbar Onset ALS/MND?

I underwent further testing, which thankfully came back negative and was told to “forget about MND/ALS”. I continued to follow up with my neurologist every 6-12 months. The plan was to “keep an eye on things”, “wait to see if and how things progress” and to “come in for a review if symptoms worsen”.

My symptoms did not improve, I just learned to live with them and adjusted my lifestyle so that they did not bother me as much.

I noticed that my muscle twitching became worse when I exercised and when taking certain supplements, so avoided these to the detriment of my overall health.

This year (2024) I started noticing further changes in my symptoms.

My current symptoms are as follows:
  1. Fasciculations: muscle twitching all over body, but has recently increased in intensity, particularly in shoulders.
  2. Swallowing issues: sensation of a swollen throat. Coughing after consuming liquids.
  3. Vocal changes: this started as having a tired throat with a hoarse voice, but recently has progressed to a loss of my upper vocal range. Either no sound comes out or the sound that does is completely off key to what I intended. My voice is now lower and raspy. The problem feels at the back of the throat. The “ka ka ka” sound is difficult to do. There is no slurring of words currently.
  4. Left hand: Clumsy. Occasionally dropping things. The last 3 fingers curl up, but I am able to stretch them out & still have use of the hand.
  5. Perceived weakness
  6. Left leg: cramping in calf, unsteady on left leg.

I saw my neurologist who performed a clinical exam, somewhat dismissed the vocal change concerns and advised me to see an ENT. He did not want to do a follow up EMG.

My last EMG was in July 2022 (4 limbs + hypoglossus) and I also had a videofluroroscopy around this time too to assess my swallow, which was thankfully fine.

Given it’s been over 2 years and my symptoms have increased, do you think a follow up EMG should be ordered?

I can’t explain away the vocal changes. I’ve had a scope down my throat previously and there’s been no signs of reflux or damage to my vocal cords.

I feel terribly guilty to be back here and bothering you about this, but please, I would so appreciate your suggestions on next steps.

Please note: that I’m NOT located in the USA, so do not have access to the ALS specialist doctors or hospitals often mentioned in this group.

Many thanks to those who have read this and decide to reply.
 
It sounds like the major potentially concerning change is in your voice/swallowing, so I would follow the recommendation to see an ENT. I don't think it's ALS, but something like that should be checked out by a specialist, even though you had testing 2y ago.
 
Hello,

Thought I would leave an update.

I saw my GP regarding weakness in my left hand. It had initially been a feeling of uncoordination- fumbly & clumsy and some curling of the outer fingers, but in recent months, I’d noticed my grip becoming weaker, especially when using my thumb and first finger. I have been experiencing cramping in the palm of my hand and twitching in the hand itself in multiple regions including the thenar.

My doctor says there is mild wasting in the thenar eminence, reduced grip strength & thumb extension and has referred me for another EMG (my last one was in July 2022).

My husband & I have cried today. My doctor hasn’t suggested any alternative diagnoses. I had 2 clear EMGs in 2022 and I was told by my neurologist to forget ALS and move on with my life. I can’t wrap my head around how this can be happening now…
 
I wouldn't make assumptions based on your GP's not having an alternative to ALS, which is more of a specialized area. Nothing is settled as yet.
 
Thanks for your reply, lgelb. You’re absolutely right of course.
EMG scheduled for later in the month.
 
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