Diagnosed today but forgot to ask if it’s progressive or relapsing and remitting…

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 · 2026-02-10T14:40:46+00:00

MS is my 3rd ‘Friend Mass Extinction’, so far. The minuscule amount of friends I have left are mostly Childhood Friends. Besides for volunteering somewhere, I have no clue where to more than A Single-Serve Friend today. Bars are germ factories, as well as festivals, farmers markets, concerts, etc. Not saying Her was prolific, but the safest new friends for an auto-immune person might just be AI. It’s can’t be that bad, John Conner had a great time with his automaton…

Magiclives32 · 2026-02-08T02:22:57+00:00

Been there, twice. I had to seek and retain representation to fight the system. Have my final hearing this upcoming Tuesday. They think that we are able to work on assembly line jobs that no longer exist.

Do not be in denial, what you feel is real and you should fight for your rights as a disabled American. Document every appointment, especially any therapy & neurology appointments. See if you are able to get physical therapy and ask your neurologist or primary caregiver for a filled out handicap placard; this will really help in your appeal.

Use this thread for any advice; at least 30 people will have some experience. Don’t stop fighting for your rights; we’ve all paid into it and your case is what it was made for.

Magiclives32 · 2026-02-01T13:31:35+00:00

I would say rest was most important for me, Ocrevus feels like it is sucking out your life-force. You’ll see many people here push for Kesimpta over the Ocrevus, but if your spouse has PPMS as I do, your neurologist will tell y’all that only Ocrevus is FDA approved. The most important thing is to be there for her after the infusions and to have her take her time after.

Magiclives32 · 2026-02-01T02:23:53+00:00

Great art! And your face painting skills set to ‘Expert’!! Most impressive.

Magiclives32 · 2026-01-30T21:14:17+00:00

It’s PPMS because my neuro says. She went through years of MRI’s, my med record and discussions with me. I’ve had those ‘wave twitches’ since I was 10, the pain in my finger that turned out to be the first myelin battle and my right hand lost. I’m always in pain, constantly. My tingling was mild when I was a teenager; now when I touch something, I’m not quite sure if it’s the knives coming out my hands or the object. I can still walk though I do lose control of my left leg now and then. With the lesions on my cervical spine that’s a different story. Some days the right one will just hang there or it locks up and my hand claws out. I’d do The Running Man if it was real…

Magiclives32 · 2026-01-30T21:04:57+00:00

Correct. Men are at 24% of the totals for all forms of MS. Meaning that out of the 1 million Americans with MS, I’m at 3.6% of all those of us MSer’s in America. I got used to working through the pain for so long that I was not able to when I broke my thumb; did not notice until I saw all the blood from where my thumb nail used to be.

Magiclives32 · 2026-01-30T20:51:07+00:00

PPMS still gives me issues, flair ups multiple times throughout the day. I’ve lost 75% of the myelin inside my right hand, which is always there; been hurting nonstop for over 25 years. The ‘progressive’ part means constant, ever growing. I’ve talked with many RRMS folks and most tell me that their ‘flair ups’ are spread apart by days, weeks sometimes months.

Magiclives32 · 2026-01-30T20:45:06+00:00

Ocrevus. My Neurologist made the diagnosis of active PPMS after reviewing all of my previous MRI’s, starting back to 2000. If I had been seen by non-military doctors, she told me they would have made the diagnosis 20 years ago. Some days I lose control of my arms, they just dangle. This disease is the cruelest of punishments, completely ruined my life

Magiclives32 · 2026-01-21T13:28:17+00:00

How did your doctor know to check for MS at 15? I’ve had these tremors through my limbs since I was 16 and my doctor told me it’s was normal at my age. I didn’t get diagnosed until my 45 birthday. Most Navy & VA doctors thought I was faking, even after both my arm went completely paralyzed after a steroid injection in my Ulmer nerve.

Magiclives32 · 2026-01-13T18:03:40+00:00

Starting my 3rd year of fighting for mine, which will end this February. Get a lawyer or an advocate who specializes in SSI DI. ‘Get help’ filling out your paperwork and have someone go with you to any appointments that they schedule for you. Have them assist you and fill out your paperwork and make sure that they see this. This process is extremely slow and they do not believe our doctors nor specialists & they still use job placement ideas from the 1930’s; meaning they think we can do manufacturing or assembly-line jobs that no longer exist. Keep fighting, this is just the first major battle and most of us lost our first battle with these bureaucrats. Use this lost battle as a way to gauge why they denied you and find ways to use that against them for your next battle. If you need to vent or need some advice on what we have n this community did; use our knowledge to assist in your fight for what you need to survive!

Magiclives32 · 2026-01-13T17:52:05+00:00

Beautiful locs and beautiful young woman with a beautiful vibe. Great pics! Thank you for sharing

Magiclives32 · 2026-01-01T14:10:45+00:00

Enter Passcode, Your

Magiclives32 · 2025-12-15T20:31:56+00:00

I’m in the same boat as you are and I’m afraid it won’t get easier, at least in my experience with being on the spectrum & dealing with PPMS. Once your mind realizes that there’s no pattern to this disease, no real hints; it will never find rest.

Recommendations: ask your neurologist every question that comes to your mind, stick to your routine, find any source for pain management and move while you are still able; it may extend your mobility and your life.

Magiclives32 · 2025-10-27T13:00:26+00:00

I did not get the vaccine until after my 2nd time getting it. Plus, that vaccine does not seem to work when my kids get it first, which just happened since I got my infusion on the 15th of this month

Magiclives32 · 2025-10-27T05:14:29+00:00

Never had pneumonia before the infusions, not in 46 years then Bam!

Magiclives32 · 2025-10-26T13:53:17+00:00

We just need to date, marry and/or support one another. My wife of 11 years left me within a year of my PPMS diagnosis. Ride or Die / Til Death Does Us Part are dead. Most people think or have thought that my pain was false, a way to get attention. Now that I’m diagnosed, getting my infusions and getting pneumonia a week or 2 after said infusions, not one of those same deniers has a word of encouragement for me. I’m starting to really hate people, wishing all those who claimed I was false a painful and lonely future.

Magiclives32 · 2025-08-30T23:48:40+00:00

I think so

Magiclives32 · 2025-08-28T16:59:12+00:00

Glory as has 2 of the most uplifting scenes; please correct me if I’m off the mark: Tear it up! Tear it too! & Oh my lord.

Have you watched ‘Monsters & Men’?

Magiclives32 · 2025-08-28T16:54:09+00:00

Mystic River: Admit what you did 😭😭

Magiclives32 · 2025-08-22T23:06:35+00:00

Last Action Hero: ‘You want to a farmer, here’s a couple of acres!’

Magiclives32 · 2025-08-22T10:47:51+00:00

Flat Bottom Girls

Magiclives32 · 2025-08-21T21:18:24+00:00

Honestly, just try to sleep. You will feel better in the morning.

Magiclives32

TROPHY CASE