PIRA,- Am I alone?

[AriSmyelin]

Has anyone else had this or even heard of it? I honestly felt way better after hearing this. My doc said I progressed to SPMS but than changed it back to RRMS we realized my symptoms were just to black and gray. We always knew I was a weird case. But understanding PIRA made so much more sense. nationalmssociety.org/news-...

[carolek572 CommunityAmbassador]

It makes sense to me as I have had absolutely no relapses ever, AriSmyelin ! I have been diagnosed with PPms, and the slow progression of this disease is what I have been experiencing. Keep Smiling, my friend

[AriSmyelin in reply to carolek572]

Always Smyelin' always laughin'...Especially after I bounce into the walls.

[carolek572 CommunityAmbassador in reply to AriSmyelin]

Are you in a bouncy castle, AriSmyelin ? Because I am with you! 😂

[AriSmyelin in reply to carolek572]

You know it! Trip on the air just to bounce off the floor, onto the wall and back onto the floor...The bounce will end somewhere....Eventually. LOL Glad you are there with me to enjoy/survive the flighty bounce of the house.

[carolek572 CommunityAmbassador in reply to AriSmyelin]

🤗

[NorasMom]

Thank you for the article, but it just makes me mad. I've said for years that they're barking up the wrong tree, and I think it's taken them too long to start looking at the bigger picture. But hopefully this will be helpful for future treatments.

[CatsandCars in reply to NorasMom]

Yes, it's rather infuriating to hear that they will soon be treating it early in the disease when you're 20 plus years in. Thanks? But I'm glad for the people it will benefit.

[CatsandCars]

Dr. Boster has mentioned PIRA (progression without relapse activity) in his videos, and also RAW (relapse associated worsening).

I'm glad you feel better.

There is a blog called MS-selfie by the neurologist whom I believe is one of the biggest proponents of the Smolderng MS concept, Gavin Giovannoni. He is a respected MS expert worldwide. The blog focuses on what MS patients can do to help themselves manage their disease.

gavingiovannoni.substack.com/about

You can subscribe to his blog by emailing him and asking for a free subscription.

[stepsforNeeC]

Thank you for enlightening us! This makes a lot of sense and probably explains the “why’s “ of this MS journey for many of us! Yes,,for those it will help it’s hopefully a positive outcome! Again, blessings and Thank you. NeeC

[AriSmyelin in reply to stepsforNeeC]

Thanks, I am glad it helped someone. It was a bit comforting for to have a bit of an answer as to way I felt like crap but no lesion activity.

[AriSmyelin in reply to stepsforNeeC]

That's a good way to put it. The "why's" even if it still isn't fully understood, it's comforting. There is no new brain activity but I feel like crap...Oh that's why.

[felafelbowl]

This sounds exactly what I have and I hope they will have some more treatments for it soon

[Greentime]

I have read about this before. I have had an easy, relapse free course of disease with symptoms that come and then go. But I am now experiencing symptoms that don't go away. SPMS perhaps, PIRA maybe? I roll my eyes 🙄because I was diagnosed before there were any drugs available for RRMS in 1985. Now I need a drug for progression without identifiable relapses and there are currently no drugs available for this! 😆 Another cross your fingers and hope for the best situation. Thank you for posting the article, I learnt a lot, and that will be helpful at my next neuro appointment.

[mrsmike9 in reply to Greentime]

I have had multiple surveys about a new drug that will be so helpful for this. I am excited as this is exactly what I've been telling my neuro what I'm experiencing. I am going to bring this up! Thanks!!

[AriSmyelin in reply to Greentime]

Yup. MS. It's the greatest example of "hurry up and wait"

[Corran731]

Thank you for posting this. It’s very informative.

[AriSmyelin in reply to Corran731]

Of course.

[Tazmanian]

Thank you