How To Diagnose Primary Progressive MS

How to Diagnose Primary Progressive MS
(2017 Revised McDonald PPMS Criteria)

ABOUT PPMS:
• PPMS is described as a slow steady accumulation of disability from the onset of symptom, with few or no relapses nor remissions.

• PPMS is uncommon, impacting 10-15% of the total MS population.

• PPMS age of onset is 40 years, about a decade later than in RRMS.
• It also tends to progress faster than RRMS.

• Also the female to male ratio in PPMS is 1:1, unlike RRMS which is 3:1.

• PPMS tend to have more spinal cord related disability.

ABOUT the 2017 Revised McDonald Criteria for PPMS:

1. One year of disease progression (worsening of neurological function without relapse), and

2. Two of the three:

• One or more T2 bright lesion(s) lesions in periventricular, juxtacortical, cortical or infratentorial brain locations
• Two or more T2 bright lesions in the spinal cord
• CSF with unpaired OCBs and/or an elevated IgG index

Reference: Thompson, A, Banwell, B, Barkoff, F. Diagnosis of multiple sclerosis: 2017 revisions of the McDonald Criteria. Lancet Neurol 2018; 17(2): 162–173.

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Learn about MS with me, Aaron Boster MD! I started this channel to help my own MS patients learn between clinic visits. I use easy-to-understand language to provide accurate and approachable Multiple Sclerosis education. So, if you’re impacted by MS and want to up your game, make sure to subscribe to my channel right now!

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These videos do not provide medical advice and are for informational/educational purposes only. The videos are not intended to be a substitute for professional medical advice, diagnosis or treatment. Always seek the advice of a qualified health provider with any questions you may have regarding a medical condition. Never disregard professional medical advice or delay in seeking it because of something you have read or seen in any of our videos.

[kapluchi]

My Dr officially diagnosed me as PPMS a year ago. My spine is riddled with lesions, I have 2 on my brain and my spinal cord is shrinking. Im partially paralyzed from the waist down. Now I’m noticing my arms and hands are getting weaker. I was diagnosed 9 years ago, 3 months after my second son was born. I said that day that I’d be in a wheelchair by the age of 40. I turned 39 last week and I am waiting for my wheelchair to be made. And next month I’ll be the lucky recipient of a urostomy. I have been fighting so hard that my Dr is surprised I did as well as I did looking at, y MRIs. I appreciate what you are doing for the MS community.

[maggiemae]

I live in Columbus, but go to the MS Oak Clinic in Akron. A few months ago, my doctor didn't have any openings so I saw the nurse practitioner for the first time. The first thing she said was " why do you drive up here when you have Dr Boster in your backyard?!" Then, last month your videos showed up in my recommended feed. 👍😎

[otheomuse]

You my friend are the best. I was diagnosed with MS Late last year at 54 years of age and listing to your video's I've learned so much more than what my Primary MS Doctor discusses with me. In no way am I saying he's not a good or great doctor but you seem to understand and listen to your patients more intently. I believe now that I have PPMS. I've only had one treatment of the Ocrevus medication and soon to take a second round but sometimes I feel like crap. Thank you Doctor for explaining things with much more clarity. I wish you were in NJ.

[indie]

Thanks for video, my consultant has given up on me since i progressed to SPMS. Was supposed to see him last month now i only see junior doctorrs who takes jotes and has to ask consultant at later date. So questions with few answers

[janclebro]

Thank you. My sixty year old brother has just been given this diagnosis. He has not cared to put much time into investigating his deterioration in health, until his wife decided she'd had enough of his strange behaviour and chucked him out and he came to live with me. I insisted he see a neurologist. His brain is severely affected (they call it extensive white matter disease in his frontal lobes, and holes in his corpus callosum), he's struggling to stay upright and he's been told he should no longer work. He's pretty chilled about it, but it's really difficult for me to get my head around his behaviour, and how to look after him.

[MatthewPlummer-vl]

Thank you my partner have her which type Monday, like that it's the RR one, which they will treat in UK. This one they don't. This has put her mind at rest etc. thank you again Matt

[kathynasholm]

Thank you for your clear, no nonsense style of providing information. Much appreciated.

[tabirthabrownfield]

Thanks for the video and education.
Are you able to do more videos on PPMS?
Treatment options, symptoms thank you

[Annthepoet]

Thanks Dr Boster, I love learning from your videos.

[jeaninethiede]

Thank you Doctor B... I just seen my Nero..he spent two hours with me! we went over all my test and talked a bit, he asked me questions I got wrong. His diagnosis was PPMS with Dementia. I knew I had issues with my mind, I just thought someone took it..but I guess it is still in there some where.. hahahah.. God Bess you for doing these vid's!

[carolstender]

Thank you for your videos. They are the best information I have been able to find. I have been unwell since my late Forties (57 now) still no diagnosis. Just had my first MRI and it was clear..waiting to hopefully get in to a neurologist soon.
I haven't been able to work because of the fatigue..I hate being in limbo..sorry for rambling. Thank you so much for providing straight forward helpful information!

[deannaepler]

Thank you dr. Boster for sharing and explaining so much info I hope to have an informed discussion with my neurologist tomorrow if I can remember all of this 😂

[yowut]

I hate to say this but you have been more helpful to me than my mellen center Dr. in Cleveland. I have PPMS and have multiple disabilities in a short amount of time. I currently take Ocrevus this is my 4th kind of medication. I’m very skeptical of this one as well. I’m not feeling any better at all.

[cassieski]

Your videos are so appreciated! Thank you for this explanation. I left a previous comment on another video talking about the use of lumbar punctures using CSF to determine unpaired O-Bands. Still anxiously awaiting this video. There seems to be a huge divide in whether or not it is necessary, or even helpful. I had a lumbar puncture and am glad I did. When going through the diagnosis process, and working through the lengthy differentials I too as a patient wanted to be absolutely sure it was MS. I had 16 O-Bands, and have yet to get a straight answer as to whether a high count means anything. Would just love to hear all your insight on the use of LPs, and what the CSF can tell us. Thanks again for taking the time to make these videos! You are reaching so many of us impacted by MS, with great information!

[akcreamhorn]

Dr Boster,
Thank you.
I value your time and thought given to making this piece,
A video which provides new learning to me
I appreciate the added insight.
The very best to you, Alex

[waterflower]

Dear Dr. B....Thank you SO very much for another informative video. I always learn a great deal from you! I was diagnosed with secondary progressive m.s. just over a year ago. Apparently I went undiagnosed for the last 20 plus years! All the symptoms I had were put down to other illness I have....like arthritis, fibromyalgia, diabetes, depression etc., Please would you be kind enough to explain SPMS? Until now, I haven't been able to find much info on this. Thank you SO much in advance! Please keep up the very good work that you are very much appreciated! Best wishes & good health to you & your family....Ann 👍🏽

[cesarromero]

I am a 53 year old man diagnosed with MSRR 3 years ago. my disability continues to progress slowly since then without attacks and following its diagnostic methodology when listen to me and the evidence from studies that I have, I believe that I do not get any improvement in my diseace since Aubagio 14 mg is not for MSPP. What are the most effective medications for MSPP? Obviusly all this will be consulted with my neurologist. Could you guide me to make the best decision? If this generates fees I would understand just let me know how the procedure will be. Thank you Doctor and do not know how much you help with your videos to MS patients around the world. Greetings from Mexico.

[annietaurus]

I have been having eye pain when looking up, muscle spasms, fatigue, loss of balance and falling. My neurologist did an autoimmune workup and tested negative for all so he says I don't have ms. But I thought blood work wasn't the way to diagnose it?

[RickoColby]

Starting at 55 via MRI (any many physical issues) I was advised I have Relapse Remitting with a heavy burden of spots.
Fast forward 18 months.. .. .. Dr's have upped the ante and changed the prognosis to PPMS. 2 of the 3 (no spinal tap performed)
Sh*T is going Sidways fast but It all still seems very subjective.
I appreciate all that Dr B says, does and shares. ~ Thx Doc.

[darlene]

Very informative. Is CIS considered an attack? If the CIS happens during the year of Neuro decline does that mean PPMS is not diagnosed? Thank-you.