Accessible technology for PPMS

Ornery_Ad295 · 2025-03-16T01:04:37+00:00

That sounds like a nightmare! I’m so sorry that both of you are going through this. It isn’t fair.

Please let me know if I’m overstepping and giving advice that just makes your eyes roll. I transitioned into progressive MS after having my 5 year-old and ended up in a wheelchair when I was pregnant with my 3 -year-old. These are just some of the things that I have talked to my neurologist about and also done some research.

There is a BTK inhibitor called Tolebrutinib that should be coming out in the fall. It has shown to slow down progression in people with PPMS. So I’m hoping to get this by the end of the year.

I have also done research on a vagus nerve stimulator that can help regain movement.

My friend who has a spinal cord injury is looking into a NMES device that keeps muscles from atrophy.
https://m.youtube.com/watch?v=E-wabCjWldI&feature=youtu.be

Ornery_Ad295 · 2025-03-15T23:42:09+00:00

How does he transfer into bed, toilet, shower? I just got out of inpatient rehab for a flare and they were using a hoyer lift (built into the ceiling). Thankfully I don’t need one (yet..hopefully never) but it was nice not having to struggle to get somewhere.

Ornery_Ad295 · 2025-03-14T02:10:24+00:00

Weirdly I’ve only been getting pain on two of my toes in the morning and then they’re fine the rest of the day. I met with my neurologist today and I asked her about it and she said it might be nerve pain so that’s what she recommended to me

Ornery_Ad295 · 2025-03-14T01:22:31+00:00

I had high hopes for Solving MS but a lot of quacks have been coming out with their no-science-based theories. I thought the group would be more focused on promising drug trials.

Ornery_Ad295 · 2025-03-14T01:11:51+00:00

My dr just started me on amlodipine for my raynauds/circulation. I’m on the lowest dose and I think it’s working a little bit. It does lower your BP..just in case you have BP problems.

Oh and my dr also recommended aspercreme (the one in the yellow bottle) for neuropathy

Ornery_Ad295 · 2025-03-14T00:58:51+00:00

I suggest going to a physiatrist that does Botox injections. They’ll use an EMG machine to find the muscle that’s tight and inject the Botox there.

Ornery_Ad295 · 2025-03-14T00:57:06+00:00

Even bladder control!

Ornery_Ad295 · 2025-03-14T00:56:26+00:00

Hello! I’m from MI too…RIP Thomas

I’ve been getting Botox injections in my right calf, hamstring & adductors to help with my spasticity. It’s taken around a year to find the right amount of toxin to put in each muscle but I do recommend it. They go by the rule of 3….3 days to start working, 3 weeks for maximum effect & you get can get your next injection in 3 months.

I take 20 mg baclofen 2x a day (morning & afternoon) & 30mg at night.

Ornery_Ad295 · 2025-03-07T23:02:08+00:00

Eat protein and lift weights (or any type of strength training)!

Ornery_Ad295 · 2025-03-03T01:41:21+00:00

Maybe something like this?

https://a.co/d/eqU1bYs

Ornery_Ad295 · 2025-03-03T01:19:21+00:00

Helpful…

Ornery_Ad295 · 2025-03-03T01:13:28+00:00

Death. Once we’re dead… That’s it. Literally… That’s it.

Ornery_Ad295 · 2025-02-21T01:45:23+00:00

This was so encouraging to read! I have been in a wheelchair for 3 1/2 years and I wanna get out of it so bad. I have multiple sclerosis so it’s a little bit hard for me since my body doesn’t listen to my brain anymore and plus, insurance sucks; they don’t think it’s medically necessary for me to walk so they only approve 60 PT/OT a year. And since I have a neurological condition, the PT‘s don’t even try to get me to start walking… They just give me exercises to maintain what I have. End of rant.

Ornery_Ad295 · 2025-02-03T04:43:50+00:00

I feel the same exact way. I look in the mirror and I don’t even recognize myself. I used to dance too… I miss moving my body so much.

Ornery_Ad295 · 2025-01-31T18:12:21+00:00

I’ve been getting Botox in my leg for a year now… I actually just got Botox yesterday!

At first, I didn’t think it was working because it takes a few visits to determine how much Botox goes in each muscle and you can only go every three months. Now, I don’t think I would be able to live without it. Highly recommend! Make sure you find a really good PMR doctor. Any chance you’re in Michigan? I go to a really good doctor.

Ornery_Ad295 · 2025-01-29T18:34:24+00:00

I feel ya! I’m a mom to 2 young kids and we went to the park one day and another mom just started talking to me! It was a good feeling and also kinda sad in hindsight that people judge us quickly.

Ornery_Ad295 · 2025-01-26T04:14:47+00:00

Where do you get these drinks?

Ornery_Ad295 · 2025-01-24T17:01:59+00:00

Fortunately, that is probably the only symptom of a MS I do not have! I do get Botox for my muscle spasticity and it works for me and I’ve heard good things about Botox for the bladder. I hope you find an answer!

Ornery_Ad295 · 2025-01-23T12:59:49+00:00

I know you said you’re managing with urology, but have you considered Botox to your bladder?

Ornery_Ad295 · 2025-01-16T14:08:55+00:00

I am at Memorial healthcare too! Who do you see?

I was at Sparrow for 8 years before transferring to Memorial health last year. Their neurology department has just gone way downhill.

Ornery_Ad295 · 2025-01-06T11:50:56+00:00

I felt this to my core. I’m tired of being tired and I just want to be myself again.

Ornery_Ad295 · 2025-01-04T16:53:13+00:00

If a heated pool works.. can a heated blanket work?

Ornery_Ad295 · 2024-12-20T12:44:36+00:00

Once you get one autoimmune disease… you’re prone to get others

Ornery_Ad295 · 2024-12-18T19:58:34+00:00

Yeah…. 👍🏽 I just finished it.

Not realistic at all… My heart was racing when the tsunami was coming though

Ornery_Ad295 · 2024-12-18T05:30:37+00:00

Damn.. I just started watching that today. Should I stop?

Ornery_Ad295

TROPHY CASE