Progressive slurring and muscle weakness/tightness/twitching

[LottieT78]

Hi everyone.

I will brief by saying I have a follow up neurology appointment Monday but I’m making a list of questions to be answered so I figured I’d use this chat to help formulate question.

I have had about a 2 month history of weakness that has steadily gotten worse and started in my thighs and back of my arms. Recently I’ve been experiencing a change in the way I speak and have had my jaw lock up and also smile sideways on two episodes that had lasted a couple hours each.

I have had a pretty big work up of testing the past few weeks including blood testing to check for thyroid, pre-diabetes and diabetes, autoimmune, infection, MRI with and without contrast of brain and cervical spine, CT of brain all with no flags other than a small disc bulge at C3/C4 that is hardly notable. Also an EEG that was clear a couple days ago (prior to my steady speech impairment).

My balance is awful. I’ll feel like my legs are contracting like I am almost in an intense workout but also feel so fatigued in them at the same time. I’ve noticed an increase in muscle twitches that is in both arms and legs where I also experience weakness and contracting. I have had episodes of slurred speech but the past two days it seems my voice is not the same in general. I feel a tightness/numbness in my jaw and bottom lip but the biggest issue is my tongue numbness that causes a slur and me to bite my tongue/not eat pr drink properly.

I have no idea at all if this could possibly be ALS but the significant progression has me worried. I’d like to hear from anyone that has had similar symptoms and also what testing I should ask for next and questions to ask my neurologist about next steps. Lumbar puncture has been brought up.

I have a 3 year old and 5 months old and am not aloud to drive or be by myself for seizure like episodes even though my EEG came back normal. The seizure like episodes are just vision changes and inability to move or speak clearly with one episode unable to do either completely (my tongue was numb after that episode). These episodes are on top of the general weakness and muscle spasm and speech impairment that is consistent. I sound like I have a thick accent and sometimes it’s slightly less but still noticeable. Hoping it is more of an episode rather than how it’ll stay or get worse.

Thanks in advance for any help you are able to offer!

 

[lgelb]

When you see the neurologist, you can certainly ask what conditions are still on the table and what has been ruled out, and what the LP would be looking for. I would think they might consider MG-specific testing given the vision changes, depending on how the rest of your exam looks. You always have the option to seek a second opinion at a neuromuscular center such as OHSU at any point in this evaluation. This sticky may be helpful.

I don't see ALS in this (e.g., vision changes, numb tongue, episode recovery don't fit) but I can understand why you are concerned more generally. Also, I would see a dentist just to make sure there is not some real issue with your jaw/bite at this point, that a night or bite guard might help with.

Best,
Laurie

 

[LottieT78]

Thank you Laurie for your helpful info.
Since posting this my vocal change has become significant and has not come and gone. Today it has been hard to lay flat and swallow saliva and harder to eat and drink (specifically with a straw or food that is dryer). Upon things getting worse with my speech I checked my tongue which I have yet to do and I have a crazy amount of twitching going on (I actually can’t believe what I’m seeing) and have teeth indentation on the side of my tongue. My overall body twitching has increased significantly too.

Hoping this is just a bug causing all of this but hoping to get info from my neurologist soon and set up EMG sooner just in case. I will look into OHSU. Thank you.