Yes finally a Dx

[MScosquiyitas]

In 2015 I was diagnosed with MS and the pandemic has made it worse 😔

[greaterexp]

Welcome to the group!

Could you explain how the pandemic has made your MS worse?

[MScosquiyitas in reply to greaterexp]

I was used to a rutine

Wake up dress go to work

Pandemia breaks

I was laid off

And since lockdown I spend my time on my bed

Limited mobility

Spasticity is driving me bunkers

Depressed

Awful

Everything in a nutshell

[bxrmom in reply to MScosquiyitas]

I'm so sorry MScosquiyitas that you were layed off Have you talked to your Neuro about ways to help your spasticity? There are stretches and meds you take to help with it. I know I haven't been as active as I would like..I try to get the 'umph' to do something but a lot of times I delay it for another day. I try to get outside with my dog when the weather is nice and that seems to help brighten the day.

[MScosquiyitas in reply to bxrmom]

I’m on baclofen & zanaflex

On next week’s going on Botox therapy

[bxrmom in reply to MScosquiyitas]

Your dr may need to increase one of them. I used to take 20mg of Baclofen every 4-6 hours for my spasms. My new Neuro changed it to 10mg every 3 hours and that has helped. He also took me off the Zanaflex because I take Tegretol and I was on too many meds for his liking.

Good luck with the Botox, I hope that it helps you. That was never suggested to me but I have heard people have good luck with it. Keep us updated when you can!

[MScosquiyitas in reply to bxrmom]

Tegretol what do you use it for?

[bxrmom in reply to MScosquiyitas]

I use it for spasms. It is usually for people with seizures but it is also for nerve pain. I take it because my spasms were becoming pretty painful. I can only take it at night because when I tried to take it during the day, it made the spams really bad...weird.

[Lilith08 in reply to bxrmom]

bxrmom I'm curious about your pain from spasticity. I've been having trouble with my hands lately--mostly while I'm sleeping, my hands fall asleep. Last night the pain woke me several times. Not quite as often, my feet do the same. Actually, as I sit at my computer right now my feet are starting to ache. So I'm wondering if there might be a link to spasticity, as that has gotten worse lately, too. Have you ever had that?

[bxrmom in reply to Lilith08]

I haven't had that, but everyone's is different so that maybe something to talk to your dr for. My spasms are in my left leg/calf area. I think it's a result of having had a blood clot in that leg in 2007.

[Lilith08 in reply to bxrmom]

Thanks. I told the neuro about it but we're wondering about carpal tunnel--though it doesn't explain the feet.

And no kidding about everyone being different! It seems spasticity is more commonly a problem in legs but mine is in my arms. Even after my previous NP was the one who diagnosed my spasticity (what I had explained as "tired" arms), on a later visit she discounted my arm complaints at first; by the end of the appointment she came around and said, "Oh! Your arms really are tight! It's usually a leg problem and you're walking just fine..." So, yeah! Hahaha!

[bxrmom in reply to Lilith08]

Every once in awhile I will get a spasm/twitch in one of my arms, but that is rare for me. Legs are probably more common but arm spasms to happen, probably not to the majority.

[rjoneslaw in reply to MScosquiyitas]

sorry to hear what's going on with you

the lockdown did a job on me as well. I had moved off a walker back to the cane but because it too cold out I couldn't go outside to walk. then because it was too hot so I couldn't go outside.

going to pt isn't an option because where I was supposed to go won't have anything til maybe until Oct if then. also I been leery of going to pt somewhere else because of the virus.

So I just workout with this online gym (themsgym.com) that focus on MS. when I went to the dr she told me how much I had improved so that made my decision to just to do the online program til this mess is over

[Jesmcd2 CommunityAmbassador]

Hi MScosquiyitas I can totally understand! This pandemic has NOT been a good time. What has your neuro said about your worsening MS? 🤗💕🦈

[MScosquiyitas in reply to Jesmcd2]

Having my Ocrevus next month also check in with neuro

She’s on maternity leave

[Lilith08]

Welcome aboard!

This major change to daily life really affected so many parts of life. I'm so sorry you lost your job. That must be really difficult. For me, I'm now used to be at home so I didn't think much had changed for me. But in the past month I've realized that all the little changes do add up: routine, activity, sleep, diet (hello, comfort food!) have all been altered and put all together, no wonder I've been feeling crappy!

For me, reestablishing routines is my number one goal. It's so difficult, though! I figure the routine is the key to getting back on track with everything else. I hope you get back on track soon, too.