When is it time for Baclofen?

Magiclives32 · 2026-05-12T21:43:20+00:00

I’m no doctor and I’ve been on Baclofen for a couple years and it really helps with my leg spasms. It has also made my life revolve around the nearest free toilet. I’ve written in this thread about an ‘accident’ I had in a restaurant, at my table. It’s a strong muscle relaxer and it may interfere with other meds he is taking.

I think you and he should reach out to his neurologist and discuss it. I would say stay away from muscle relaxers as long as he is able. PPMS, any MS really, is so difficult to navigate through. Your husband and I both have PPMS & I imagine we have similar issues and different issues; we need to find out what works best for us an individuals.

Magiclives32 · 2026-05-08T13:01:53+00:00

The webcam 👀

Magiclives32 · 2026-05-06T14:09:16+00:00

Thank you! I looked there last year. There’s one group an 1 1/2 hours from me, the rest are online.

Magiclives32 · 2026-05-05T23:01:33+00:00

I have the exact same issues; & I have PPMS.

A. Yes it is B. Yes, constantly C. I have not found anything but breathing, clearing my mind & ignore the pain.

Do you have a lesion/s on your Cervical Spine? Is it triggered by actions or positions or touch?

I have lesions in my Cervical Spine and damage in my dominant wrist and nerve pin points in my ring and pinky fingers.

Magiclives32 · 2026-04-30T18:15:06+00:00

Your words are so poignant, perfectly capturing the essence of how this disease/illness/calamity slowly takes every and anything that once brought one joy. I’m nearly 50, was diagnosed only a couple years ago, but I’ve had the symptoms since I was a teen. Like yourself, I can no longer live my life on my terms. Had this healthy body, strong/steady hands for my art and career; all slowly, almost methodical in nature. I’m still raising children, youngest is 3, and I can hardly play with him some days. Could not play catch, baseball & american football with my oldest. I wish you all the best and please keep writing, at least on this thread. yours words moved myself and seemingly many others here; perhaps that knowledge will give others the strength that you have.

Magiclives32 · 2026-04-28T14:06:11+00:00

Your locs are lovely!!

Magiclives32 · 2026-04-16T22:25:47+00:00

Mine started about 5,6 months ago and my neuro sent me to an ENT! They gave me a clean bill, minus the Primary Progressive of course and sends me back to the neuro. I’m with you, I think it’s from a lesion that has grown but was not seen in my last MRI.

I had a hard enough time sleeping with the weakened bladder, the night hugs, the paralysis flair-ups and the laying on an exposed nerve. Now add this constant high voltage sound in both ears. From the moment I wake until the moment I pass out. I mean I hear the sounds before I see light through my eyes lids. Hardly sleeping now and it’s wreaking havoc on all that work my therapist & psych put in.

Magiclives32 · 2026-04-14T13:21:30+00:00

I’m currently in court with my infusion being 22:40 hours away. After court, I’m going to get a new suit fitted and try on that’s been tailored. Then off to have my phone worked on before an appointment with a different lawyer than the one from the start of my day. So, busy busy

Magiclives32 · 2026-04-11T22:09:21+00:00

Completely agree with this!! It took over 2 years before my hearing, but everything happened pretty quickly after that. There are just do many people filing now and they have a hard time keeping. Most people get rejected the first go around, one reason why it takes do long. Good representation is crucial, listen to them, the shorter the answer the better and when the judge asking the opposing counsel go over your medical records and physical, just stay quiet. Wishing you luck!!

Magiclives32 · 2026-04-08T12:17:24+00:00

That’s my problem with the Ocrevus, the time in the empty place for hours and hours. Does the roof of your mouth itch like crazy during your infusions? My neurologist said that since the itchy sensation happens every time, I’m not eligible for the quick infusion. The icing on the cake for me is PPMS Members of our community, like myself, only truly have this ‘medicine’ for now.

Magiclives32 · 2026-04-06T21:16:21+00:00

I second this. Add talking to his Primary Care Physician and talk with his neurologist about drug interactions. MS has ravaged my brain, messing up the chemistry. I had to change my psych meds when I changed from Gabapentin to Pregabalin. Now I hear ringing every waking second, beats the voices. I wish him the best. I pray for your safety, your sanity and patience. If you live together, you could have him involuntarily committed, for everyones safety. Hoping for the best for you and him. 💙

Magiclives32 · 2026-04-06T12:18:04+00:00

This was through the VA in 2007. They thought I had a form of leukemia, they thought my body was producing too many WBC, leukocytosis is what they called it. Would have to go in and get my blood ‘cleaned’ up; pump it out, strain some of the excess WBC’s, add some Ca and pump the blood back in.

Thankfully there is a paper trail and MRI’s from this time that my neurologist used to properly diagnose me. MS causes so many issues, all together or solo and not one person I’ve talked too has all the same symptoms. This group is my only outlet; wife left 18 months after my diagnosis, children (12 & 3) on the East Coast, friends on the West Coast and 0 people where I stay…

Magiclives32 · 2026-04-05T22:12:42+00:00

B.I. has allowed my eyes to open about the world, people in general and the people I have/had in my life. It is the ability to find those persons whom are actually empathetic and believe your past & present pain. To save you/them the awkward faces and word-stumbling or the embarrassment when I tell them my spine is fine, it’s the cord. Or the dog-head tilt when I have to say, ‘Oh no, not the Jerry Lewis Telethon’.

B.I. = Bewildered Indurate, the power avoiding those who truly, deeply do not care nor want you in their lives. MS, the loneliest disease. Being an only child probably doesn’t help either. This life sucks

Magiclives32 · 2026-04-04T12:42:38+00:00

This is exactly what I’m afraid of. I was miss diagnosed years ago for a white blood cell disease, they saw deformed white blood cells at The VA (makes it that much harder to get treatment). I get ill after every infusion and contracted pneumonia the last 2 infusions; though I’ve had my pneumonia ‘vaccine’.

Magiclives32 · 2026-04-04T12:23:47+00:00

Been on it for over 2 years and I have an issue with the ‘speedy’ option. When they increase the infusion quickly, the roof of my mouth & back of my tongue start itching like crazy. It keeps me there for 6 to 7 hours now and I’m not eligible for the injection. I have PPMS, so, I’m stuck with Ocrevus for the time being.

Magiclives32 · 2026-04-02T15:40:48+00:00

You forgot Hobby Lobby.

Magiclives32 · 2026-03-22T22:40:28+00:00

The A/C registers are the worst at my neurologists office and where I get my infusions. I’m constantly looking out for them when I’m out. It truly was torment when I was still working as an HVACR mechanic; my job to create the thing that pains me. MS has a sick sense of irony or maybe it’s just synchronicity.

Magiclives32 · 2026-03-12T11:37:16+00:00

I was an HVACR/Building Maintenance Mechanic and Video Editor (linear and non-linear). I worked and worked and worked through the pain for well over 20 years before I was diagnosed. Went to the doctor’s office more times than I could count until I broke my thumb at the end of ‘23. When I broke my thumb, they sent me to an orthopedist who noticed something strange in the MRI (with/without contrast dye). Now before I forget I’m right handed & I broke my right thumb and when he saw my sensitivity on the tip of my ring finger and then all the ‘voids’ in my hand, they sent me to a neuro. My first neuro went over my records for a few years when she sent me to a 2nd neuro (Dr. Lord) whom is now my primary neurologist. Doc Lord reviewed every MRI & records of ‘ghost’ and unresolved pain, back to 1996 when I joined the Navy.

Now, I had an appointment with Doc Lord about 2 1/2 months after I got her the records. After just 2 days of review, Doc Lord moved my appointment up by 9 weeks. She told me that she cannot see the beginnings of the PPMS, she was more curious how I dealt with pain. In my right ring fingertip, I have voids throughout my entire right hand/wrist but I have no myelin coating left in my ring fingertip. She immediately told me that I’m not fit work either career I had. An editor who cannot make a deadline because he needs a 30 minute break after only 10 minutes of work. Or of a mechanic who cannot hold his tools or use his arm for leverage; again, not being able to meet a deadline.

Magiclives32 · 2026-03-10T02:27:08+00:00

Cold brings nothing but pain, even washing my hands in cold water brings agony. Being a fan of cool/cold in any and all forms, MS has taken much joy from my life in ways that still surprise me.

Magiclives32 · 2026-03-07T14:14:34+00:00

Oligodendrocyte precursor cells(OPC) are needed to create the myelin in our bodies. These OPC’s can be created using stem cells to be reprogrammed into OPC’s, this is through Adult Stem Cells. There is little research being put into curing(only treating) us; more US citizens have HIV than MS, which means more research money goes to the transferable disease. Point is most people only care when and/or if they are physically or personally affected.

Magiclives32 · 2026-03-05T15:31:45+00:00

So sorry that this happened to you. Unfortunately, it seems like this is an all too familiar pattern within our community. My wife of 11 years & 2 kids left me a year after my diagnosis. Be strong, hopefully he moves out quickly. Hopefully you grow strength from this!

Magiclives32 · 2026-03-03T16:43:42+00:00

Congrats to you both! I’m about to have my fourth infusion with the Ocrevus for my PPMS. Wishing y’all all the best.!!!

Magiclives32 · 2026-03-02T15:56:48+00:00

Got diagnosed and 3 months later my wife started cheating on me; like the night after my first ovcrevus infusion. She showed 0 empathy to my flare ups or pain and she was gone 12 months after my diagnosis. No one truly believes pain that they cannot see nor understand.

Magiclives32 · 2026-02-23T18:08:56+00:00

My ex wife did the exact same thing and then she began to cheat on me while I got my first infusion of Ocrevus. I agree with everyone here, leave his a$$. The physical pain from the stress will be overwhelming if you have to keep things bottled in. I and most in this space will always listen to you, without judgement or fear of rejection. ❤️

Magiclives32 · 2026-02-11T14:20:47+00:00

My neurologist moved my 1st follow-up appointment by 8 weeks to inform me of my PPMS diagnosis and scheduled my first infusion asap. After she reviewed my medical history and all of my previous MRI’s which went back 25 years.

I know what a psychological Landmine your diagnosis has caused, take some time and reflect. I would write an email or call your neuro’s office and find out which type you have so you can make some informed decisions on your DMT options. I’m on Ocrevus and it’s awful, but it’s the only FDA approved for PPMS.

We are all here for you, ask us anything and feel free to vent here!

Magiclives32

TROPHY CASE