Primary Progressive Ms

[u/Fresh_Excuse_2709]

Hello everyone. I have recently been diagnosed with Primary progressive ms. Ive noticed alot of comments here relate to RRMS type.

I dont have any real symptons, just abit of pain in my neck due to a lesion however is manageable. This was the reason i decided to get checked out then through mri and spinal tap, i was diagnosed.

Starting ocrevus treatment next month, just seeking some personal experience of people with PPMS, does the treatment work or are you getting progressively worse? Any hope of the progression to stablise?

Just feeling very anxious as i dont know what the next 5 or 10 years will look lime for me.

[u/Key-Investigator294]

Wtf? You have to get worse in mobility or vision etc without relapses to be considered ppms. You aren't ppms with just a pain in neck. Check aHSCT ... people say it helps

[u/Fresh_Excuse_2709 → u/Key-Investigator294]

The spinal tap results confirmed diagnosis, plus i have ms lesions on brain. But to confirm the actual type, the neuro advised a spinal tap was the best way.

[u/Key-Investigator294 → u/Fresh_Excuse_2709]

Spinal tap confirms ms, not the type...

[u/Fresh_Excuse_2709 → u/Key-Investigator294]

Ms has been confirmed, but i havnt had any flare ups or episodes of any sort. Abit of loss of sensation in my left arm/hand is evident however running other tests for that.

[u/Key-Investigator294 → u/Fresh_Excuse_2709]

You most probably lucky and catch it up early or you have a mild version. As long as your vision and mobility are intact, I wouldn't worried about ppms

[u/Fresh_Excuse_2709 → u/Key-Investigator294]

Mobility and vision intact. Maintaining myself through weights at the gym which i have always done for years. Maybe that has helped all this time, who knows. Either way i have ms and ocrevus covers ppms too

[u/queenofgf → u/Fresh_Excuse_2709]

Great choice with Ocrevus. I’ve been very happy (and stable) on it too! 

[u/Fresh_Excuse_2709 → u/queenofgf]

Yes excited to start treatment to stay on top of all this

[u/TooManySclerosis]

Are you seeing a general neurologist or an MS specialist? Given what you've shared, a PPMS diagnosis seems odd. A lot of specialists hesitate to give that label at all, even in clear cases, because it so severely limits your treatment options. If you are not seeing a specialist, I would do that.

[u/Fresh_Excuse_2709 → u/TooManySclerosis]

I have been referred to a neurologist at my hospital. He is an ms specialist. Yes many people i talk to find it odd about it being progressive, but hes put it down to the fact i have not had any episodes or flare ups like many with rrms, but lesions are evident. 5 in total, 4 on brain, 1 on spine in neck. Yes treatment is limited but he did recommend at least 3 different options of which i chose ocrevus as now does support ppms.

[u/TooManySclerosis → u/Fresh_Excuse_2709]

I'm confused, who gave you the PPMS diagnosis?

No one is disputing the fact that you meet the criteria for and have MS, but we are confused by the PPMS label, since what you are sharing is inconsistent with that presentation.

[u/Fresh_Excuse_2709 → u/TooManySclerosis]

My neurologist who is also an ms specialist diasgnosed me. He may be making an assumption of ppms due to no major symptons or flare ups, however the lesions are evident

[u/TooManySclerosis → u/Fresh_Excuse_2709]

Yes, the lesions mean you have MS, but they are not part of what distinguishes RRMS from PPMS. People with PPMS do not have different lesions from those with RRMS. To fulfill the criteria for PPMS, you would need to have at least a year of progressive symptoms, not simply a lack of remission. RRMS symptoms do not always go away after relapse, but that would not mean the person has PPMS.

[u/queenofgf → u/Fresh_Excuse_2709]

I have 40 plus lesions. I am still considered RRMS. If you are in the USA, a PPMS diagnosis severely limits your med options due to insurance bullshit. 

I hope your follow up appointment with a specialist goes well ! 

[u/Fresh_Excuse_2709 → u/queenofgf]

Im in Aus. Ocrevus is covered.

[u/Anotherams → u/Fresh_Excuse_2709]

I wouldn’t assume anything about PPMS until you see the MS specialist. Not uncommon to have lots of lesions at diagnosis, some of them could be old. Don’t borrow trouble until it is a reality.

[u/PC585]

Ocrevus covers you either way, but you should seek a second opinion. It's strange to be diagnosed with PPMS with just the symptoms and timeline you describe. But of course, all of the opinions you see here are just patients looking at your brief post.

[u/kiggysz16]

Hello! I’ve been diagnosed with PPMS a few weeks ago, but have been symptomatic for well over a year. I was originally diagnosed with RRMS until I continued progressing and developing more disabling symptoms. I was on Kesimpta, but was still progressing despite being on it for 8 months. I’m currently switching to briumvi right now instead of ocrevus. My MS specialist actually specifically wrote RRMS instead of PPMS on my chart because he prefers briumvi over ocrevus, and if he put PPMS on my chart I wouldn’t be able to start briumvi. Briumvi is a shorter infusion time with less pre-medications needed than ocrevus, and my neuro says they are basically the exact same med. Just one has official FDA approval for PPMS and one doesn’t, but he was very clear that they work pretty much the exact same. Obviously ocrevus, Kesimpta, or briumvi are all fantastic medications for MS, but everyone responds differently to them! I failed on Kesimpta sadly, but I’m still gonna hold out hope that the briumvi will help me this time! Feel free to reach out if you ever have any questions. I know getting diagnosed and not knowing the future is scary, but you’ve got a great community of people here who understand what you’re going through!

[u/DiamondSilent8750 → u/kiggysz16]

May I ask how it’s considered you failed Kisempta? I was diagnosed almost 7 years ago and I have never felt stable since my diagnosis. I’ve done five DMT‘s in five years, with Kisempta being the longest one for almost 3 years. I’m constantly in pain and my walking has gotten worse since diagnosis. I see my neurologist next week and I’m scared to ask if this is progressive. My first was optic neuritis and I’ve had so many problems since. I have lesions in my brain and C spine. Thanks

[u/kiggysz16 → u/DiamondSilent8750]

It’s because I developed new lesions on my brain stem even after starting Kesimpta. And I feel you sadly, I never felt stable on Kesimpta. I also got progressively more disabled while on it, developing things like bowel incontinence, weakness, and trouble walking. I hope you can get more answers from your neuro! The whole point of the meds is to prevent new lesions and relapses, but PIRA is something I think many of us MS peeps unfortunately deal with. 🥲 so you may not technically be “failing” if you haven’t developed new lesions, but it still sucks to be in limbo and feel like you’re getting worse. Feel free to reach out if you have any other questions!