GaborBP
Member
- Joined
- Sep 11, 2017
- Messages
- 10
- Reason
- Lost a loved one
- Country
- HUN
- State
- Budapest
- City
- Budapest
Hi,
I started a discussion here last September, right after having a mildly (but widespread) dirty EMG. I'm sincerely grateful for the support and encouragement I received from the PALS and other people in this forum, they helped a lot to get me trough a very dark phase of my life. I'm checking in, because in the last 2 months my symptoms started to change in strange ways. A quick recap of my history
The following things are strange/inconsistent to my neuro:
My concern is that in the last 2 months I started to get bulbar symptoms, mostly for swallowing water, rarely food. It started with throat gurgles and nasal congestion, which I can't clear (I still have those) now I often gulp when drinking water and swallow air/can't breath after drinking. I don't choke or regurgitate, and I do have both anxiety and signs of silent reflux. In fact, I've been coughing after meals, and having nausea in the morning for many years. I also had episodes of hypersalivation, but I can swallow that just fine. My tongue is a bit scalloped, but my neuro said it was no big deal. I'm still waiting for the swallow study appointment.
I sometimes have episodes of perceived slurring, but people say I speak normal. However, I had a scary episode after I had taken Mestinon, which was prescribed for me in a kinda ad-hoc way: I objectively slurred for about 30-60 minutes, and my tongue and around my eye I twitched like crazy for a couple of hours. It absolutely scared me, since I've never had tongue twitches, and I know that they are rarely benign.
My questions are the following
I'm really thankful for those who took the time to read my post and I'd be grateful for any insight.
I started a discussion here last September, right after having a mildly (but widespread) dirty EMG. I'm sincerely grateful for the support and encouragement I received from the PALS and other people in this forum, they helped a lot to get me trough a very dark phase of my life. I'm checking in, because in the last 2 months my symptoms started to change in strange ways. A quick recap of my history
- 29 yo male, father passed away from bulbar at 56, after 2 years. No family history, but head trauma and toxin exposure. SOD1, C9 negative
- '15 August subjective left arm weakness, September: widespread but sporadic twitches, except for forehead over my left brow, it's going on non-stop (!) since '15 Nov. This is the only place where Lyrica doesn't work
- MRIs, autoimmune bloodwork essentially clean (single T2 lesion)
- Episodic trigerminal neuralgia, abducens palsy, muscle stiffnes. Gone now
- '15 EMG clean, '16 NCV: some sligthly reduced CMAP, mild temporal dispersion, possible mild myelin damage
- '17 EMG dirty: fib and slightly increased amp, mild poly in tibialis/forehead, inc. insertional activity in deltoid, a single fib in the thoracic paraspinals. CMAP slightly better, but more marked temporal dispersion, normal recruitment - not specific enough for ALS
The following things are strange/inconsistent to my neuro:
- My left arm basically regained all strength about a year ago. I think that's what the EMG showed: irritability, no fibs, slight poly -> healing nerves?
- Normal clinical, only UMN sign is myclonus, most likely from antidepressant.
- Leg stiffness, weakness, joint cracking comes and goes
- Slightly short MUAP combined with slightly increased amp, bordeline abnormal poly and good recruitment in TA. This is a weird combination
My concern is that in the last 2 months I started to get bulbar symptoms, mostly for swallowing water, rarely food. It started with throat gurgles and nasal congestion, which I can't clear (I still have those) now I often gulp when drinking water and swallow air/can't breath after drinking. I don't choke or regurgitate, and I do have both anxiety and signs of silent reflux. In fact, I've been coughing after meals, and having nausea in the morning for many years. I also had episodes of hypersalivation, but I can swallow that just fine. My tongue is a bit scalloped, but my neuro said it was no big deal. I'm still waiting for the swallow study appointment.
I sometimes have episodes of perceived slurring, but people say I speak normal. However, I had a scary episode after I had taken Mestinon, which was prescribed for me in a kinda ad-hoc way: I objectively slurred for about 30-60 minutes, and my tongue and around my eye I twitched like crazy for a couple of hours. It absolutely scared me, since I've never had tongue twitches, and I know that they are rarely benign.
My questions are the following
- Can you have a short but serious slurring "attack" in ALS? For folks who tried Mestinon: can it cause dysarthria and a crazy tongue/eye twitching episode?
- Are my swallowing problems consistent with how bulbar works?
- And most importantly, have you ever seen anybody with similar symptoms being diagnosed with either an MND or anything else? My neuro is utterly perplexed.
I'm really thankful for those who took the time to read my post and I'd be grateful for any insight.