Numb tongue

[Ellie]

I can still feel pain in my tongue

So it's not numb - now it makes sense why you wear mouthguards, my little brain was confused 😏 xx

[matthew55]

I never said my tongue was numb I said it's almost dead, as in doesn't move anymore. Gum shield is primarily in to save me breaking teeth or cracking enamel.? 😁🤗😘😍xx

[Ellie]

My tongue is almost dead but it started just being numb about a year ago.

I obviously misunderstood what you meant by this.

[matthew55]

No worries it was numb at the start but that wore off. No harm, no foul. Peace. 👍🤗😘😍xx

[Mary C]

It sounds a difficult thing to cope with Matthew.
Keep strong
Mary

[matthew55]

It's just one more thing is all 😁🤗😘😍xx

[LindaB]

PeterPan I find that because I'm slow to try and swallow the Riluzole tablet it starts to disintegrate on my tongue, it then feels very slightly numb not for long.
Different topic but I also felt nauseous and really out of sorts so stopped Riluzole for 6 days....just restarted.

[Ellie]

Different topic but I also felt nauseous and really out of sorts so stopped Riluzole for 6 days....just restarted.

Did you feel any better off the Riluzole, Linda? xx

[LindaB]

Ellie yes I did....slightly regarding not feeling nauseous so ate better. However don't know if a connection but my breathing worse. I'm seeing respiratory team tomorrow.

Restarted Riluzole today so if I do feel the same symptoms I'll know it's cause.🤔

[Ellie]

Damned if you do, damned if you don't... xx

[LindaB]

After restarting the riluloze following a break due to feeling very sickly - today I felt really nauseous....to the point that even brushing my teeth made me gag. The reality is it may not be the medication but everything points to that. I'll let my mnd consultant know tomorrow. I want to take it but not if it erodes my quality of life...I imagine he might suggest taking another tablet to counteract nausea but do I gain enough from Riluzole to justify that?
#sigh 🤔😒

[Ellie]

I imagine he might suggest taking another tablet to counteract nausea but do I gain enough from Riluzole to justify that?

Do you take a 'stomach liner' such as lansoprazole? IDK if it would make a difference but I'd be tempted to try that first before an antiemetic, which can be quite hardcore for permanent/frequent use.

In the grand scheme of things, if Riluzole had that effect on me, I'd stop taking it without a second thought. It's no panacea. xx

[denise]

Stephen stopped taking his about 6 weeks ago. He's not so agitated. I'm sure it's the riluzol. He doesn't want to take it so I'm happy with that.

[matthew55]

I stopped ages ago and I feel great. Well as good as I can be. 👍😁😘😍xx

[LindaB]

No I'm not taking anything else just now...although the consultant might suggest.
I think you're right about Riluzole...no way I want to feel nauseous if I can avoid it. Thanks Ellie good to talk xx