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A group of differently abled people sitting and conversing together while one person standing in the middle gets the most attention.

Not My Type of MS

I receive a steady stream of MS news items. Unfortunately, almost none of it applies to me. I do have MS, just not that type of MS. I am the Titanic passenger, wandering the sinking ship as if in purgatory, always being told, “This lifeboat is not for you. Go find another.”

I have the rare type of MS

The majority of people with MS are diagnosed with the relapsing-remitting type (RRMS). About 15 percent are diagnosed with primary progressive MS (PPMS). That’s my type. For more information on the various manifestations of MS, click here.

What’s the deal with PPMS? First, because PPMS is less common than RRMS, we are often overlooked when it comes to research and treatment. Second, PPMS patients typically have worse outcomes than RRMS patients, regardless of treatment. It’s a double whammy.

Sometimes, well-intentioned friends or relatives don’t know about this difference in MS subtypes, and the conversation goes something like this:

“It seems like they come out with more and better treatments for MS every year.”

“Yes, that is great news. But it doesn’t apply to my type of MS.”

Then there is an awkward silence; then we talk about something else.

As of this writing, the FDA has approved 16 disease-modifying treatments for RRMS. There is but a single drug approved for PPMS, and it doesn’t work very well for advanced patients like me. So, while the relapsing community has treatment choices, the progressive community waits patiently — or sometimes impatiently — for our turn.

Why has PPMS taken the backseat?

What drives this disparity in treatment options? One could argue that society’s resources should be allocated to help the most people — RRMS folks in this case. I agree, in principle. However, in practice, this translates to pharmaceutical companies allocating their research dollars to the treatments that will make them the most money. When I look at it that way, it feels less like social pragmatism and more like corporate greed. But that’s an essay for another day.

Another reason there are so many more treatments for RRMS than PPMS is that PPMS seems to be a more difficult problem to solve. Even if both types had received equal attention in the laboratory, I feel PPMS would still lag in the number of treatments developed.

RRMS is no walk in the park

None of these 16 treatments for RRMS comes even close to curing the disease, so although the choices are relatively broad compared to those of us with PPMS, it’s not as if RRMS folks are dancing in the streets. Furthermore, within 10 to 20 years of diagnosis, RRMS people often progress to secondary progressive MS (SPMS), which is similar to PPMS.

There is some good news. Today, PPMS is finally getting more attention from the research and treatment communities. I appreciate the effort, but I long for results — for a real treatment.

I don’t wait idly, however. I do what I can to improve my life.

The Internet knows everything about me

Because I have almost no use of my arms or legs, I’ve automated my smartphone, computer, lights, shades, televisions, doors, etc. with voice controls. As a result, my personal information is tracked, cataloged, analyzed, bought, and sold by Amazon, Windows, Google, and Apple, none of whom I can manage without. They all know I have MS, and my newsfeeds are adjusted accordingly. To guard against disappointment, I maintain low expectations. Whenever I see a headline with good news about MS research, I assume it doesn’t have anything to do with PPMS, so I won’t be disappointed when I read it.

Except, I am disappointed. I exert some control over my expectations, but they refuse to be tamed. Sometimes, these petulant hopes rise, only to fall harder in the end.

It’s complicated to be part of a minority subtype. I am at once happy for RRMS patients and envious of them, like the orphan child left behind as one friend after another is selected to go home with a nice family. Such is life for those of us with primary progressive multiple sclerosis.

I dream of a cure

There is one circumstance that would change the outlook for people with PPMS.  What if PPMS became the first form of the disease to be cured? Although I would feel bad for my brothers and sisters with RRMS or SPMS, I wouldn’t be the guy inside his smart home, conversing with his smart devices. Instead, I would be the weird guy in front of his house, dancing in the street.

This article represents the opinions, thoughts, and experiences of the author; none of this content has been paid for by any advertiser. The MultipleSclerosis.net team does not recommend or endorse any products or treatments discussed herein. Learn more about how we maintain editorial integrity here.

Comments

  • michclaud
    2 weeks ago

    I also was diagnosed with PPMS, wonderful, my sister drives me crazy because she is constantly coming to me with stories of this one and that one who are just about cured doing or eating this or that !! I have seriously given thoughts of stopping my Copaxone shots, because I don’t know if they are really helping me & the $7000 a month cost to my insurance company!

  • Mitch Sturgeon moderator author
    2 weeks ago

    michclaud,

    Isn’t that frustrating? But, of course, these people mean well. Perhaps the best thing is to be honest with your sister and say something along the lines of, “I appreciate how much you want to help me, but I’m evaluating options in consultation with my medical team, so there’s no need for you to keep sending me ideas you find.” It may take more than one of these conversations, but she’ll get the idea eventually.

    Regarding your Copaxone, I’m no doctor, so I can not advise you, but it is certainly reasonable for you to raise your concerns with your neurologist. Together you can figure out if a change in treatments, or the elimination of a treatment, is warranted. Good luck!

  • vvxjr9
    2 weeks ago

    I have SPMS and I too dream of a cure for our terrible disease. I am planning to switch my DMT to an oral pill instead of the monthly infusions. I’m also switching one MS neurologist for another MS neurologist and hope for better care.

  • Shelby Comito moderator
    2 weeks ago

    We are hoping the same for you as well @vvxjr9! Change can feel scary and stressful, but I commend you for advocating for yourself and seeking better options for your health needs. I know finding a new doctor requires a lot of effort, but finding the right one for you can make such a difference. We’ll be thinking of you and hope you’ll keep us posted on your search and how these changes are working out for you.
    – Shelby, MultipleSclerosis.net Team Member

  • Mitch Sturgeon moderator author
    2 weeks ago

    Good for you. Most of us act as if we can’t fire our neurologist, when in fact we can!

  • Rascil63
    4 weeks ago

    I was diagnosed in March of 1988.Back 30 plus years ago my first Neroligest told me..”Pete there will be a cure in the next 3 to 5 years”..What the hell happenned to that.I tell you is there is no $$$$$$ in a cure for ms…16 products on the market.The stock holders don’t want a cure..Bottom line. .Peter G. from Da U.P of Michigan

  • Mitch Sturgeon moderator author
    4 weeks ago

    Peter, your neurologist was particularly out of touch. They usually say “the next ten years,” and obviously that has been wrong as well.

  • Rita Engblom
    3 months ago

    I concluded long ago, that drug companies test on RRMS because that is the low hanging fruit. Most people diagnosed with RRMS can make new drugs look promising and pass FDA approval. Had I participated in a drug trial when I was diagnosed with RRMS in 1993, a manufacturer could report overall positive results initially and get FDA approval for expensive medications. Now, disabled, I can only hope they delayed my progression. The ABC medications available when I was diagnosed all reported statistics like some % chance of reducing your attacks in half. In other words, there was no way to know if it was working. I took Avonex for more than a decade. Would I have progressed quicker otherwise? I’ll never know. In my opinion, this is exactly why they don’t test on SPMS and PPMS.
    What happened to The Myelin Project. There was a very promising blurb about it at the end of the movie “Lorenzo’s Oil” in 1993. Sadly, I can’t help feeling like the rich get richer managing diseases. Where’s the money in a cure?
    Admittedly, a sad and cynical viewpoint. Of course, I could provide similar rants about cancer.

  • Mitch Sturgeon moderator author
    3 months ago

    Rita, your skepticism is understandable. And you’re right about the reasons why there is less research on progressive diseases. First, there are fewer patients with a progressive condition which equals lower revenues. 2nd, it’s easier to count relapses with the drug and without it than it is to try and figure out if the rate of progression is slower or faster with the drug or without it.

    As for the myelin project, I looked them up and they are still doing their thing. I’m sure they wish they had come up with a breakthrough by now also.

  • Mitch Sturgeon moderator author
    1 month ago

    Rita, my apologies. But your rhetorical question did make me wonder about them too. I was glad to find that they are still plugging away, like us!

  • Rita Engblom
    1 month ago

    It was a rhetorical question.

  • Cassia
    3 months ago

    I loved your article, you are a very good writer. I am sorry for your struggles with PPMS and I wish you all the best.
    I just would like to say that, with all due respect, I think MS is MS. I have the RRMS type and that doesn’t make easier.
    I’ve been through so much with daily injections that left an egg size swelling on the site, all the invisible symptoms, such as a constantly fatigued, dizziness; the cognitive and emotional issues. So, my point is: MS is a terrible disease, period. And, off course, it is even worse when it progress fast, like the PPMS.
    About medications, I heard that there is no medication for PPMS due to the fact that PPMS has no inflammation in the brain, which is the target of the medications. In the case of PPMS, the issue is more connected with the spinal cord. I am NOT a doctor and I don’t know if this is even a true, I just read that. What does your doctor say about that fact: there is no medication available for PPMS?
    Well, I am sorry again. For you and me. 🙁
    I wish you all the best.
    Thank you for your wonderful article.
    Good luck!

  • Mitch Sturgeon moderator author
    3 months ago

    Cassia, thank you so much for stopping by and commenting. You are correct that some people with RRMS have it just as bad as I do. It’s different for everybody. When I look at it that way, we’re all in this MS thing together!

  • Cassia
    3 months ago

    Hi Mitch,

    Nice to meet you. Yes, unfortunately it is the true. I have a friend with PPMS who used to say: “I don’t know which is worse: no medication or the side effects of those drugs”. I think there are no fair disease but MS is specially unfair, because affects young adults, in our prime years of life, when we are working, making plans and suddenly it is over. My 75 year-old mother has more energy and social life than me. I have no energy to do anything, so slowly I had given up. I’ve tried to have a normal life, forgetting about MS, but then the monster shows up again and tells me who is the boss. It is hard.
    P.S: I really loved your article and I think you are a gifted writer. I used to be a journalist – long time ago in Portuguese, my mother language – so, my opinion has some value. :). Bye. Let’s keep in contact.

  • BethSlusher
    3 months ago

    I am sorry Mitch. I have RRMS but I had an uncle that had PPMS and do have an understanding of the disease. Hope is an important thing to hold on to but reality always looms doesn’t it? I’m glad that you are embracing the technology that is available. I pray for a cure that will help what is causing our bodies to what they are doing without our permission. Best wishes.

  • Mitch Sturgeon moderator author
    3 months ago

    Beth, thanks so much for writing. I developed an unusual view on hope. I have hope, but I don’t depend on it. Given my situation, acceptance is a much more important tool. I accept that I will likely never get better, and that allows me to move forward to the extent I can. It’s a bit liberating. But that’s not to say I’m completely ignoring the treatment possibilities. I’m just not emotionally investing in any of them.

  • Anthony H.
    3 months ago

    Hi Mitch – Good point about drug companies being mostly interested in where they can make the most money – relapsing remitting MS. But with more and more people surviving into old age with MS, there’s also the possibility of more people moving to progressive MS. Certainly it’s happening with people today who didn’t have the benefits of today’s meds when they were still relapsing remitting MS.

    One thing I see is that although the news articles may relate mostly to relapsing remitting MS, most bloggers I read seem to have progressive MS of one kind or the other. Perhaps it’s just me being unconsciously selective, or otherwise that it’s that people with progressive MS have an ongoing struggle with MS every waking minute of the day, often involving significant and increasing physical disability. They are more likely to blog about their disability (mis)adventures as a way of communicating and constructively dealing with the MS monster.

  • Mitch Sturgeon moderator author
    3 months ago

    Anthony, interesting take on the effect that life expectancy has on disease distribution. Along with PPMS and SPMS, I suppose we could add in cancer, Alzheimer’s, Parkinson’s, and more. Good point about bloggers, also. I certainly didn’t start blogging until my disease had progressed to the point where I couldn’t work anymore. Thanks for sharing your insights.

  • rnhviolin
    3 months ago

    tears of understanding, thank you

  • Mitch Sturgeon moderator author
    3 months ago

    thank you

  • Shezza
    3 months ago

    Hi, I am going through a very rapid decline now. 6 years from healthy to wheelchair and limited use of my right arm. I dresm of the day…I’m just glad I’m not the only one out there dreaming.

  • Mitch Sturgeon moderator author
    3 months ago

    I’m so sorry to hear about your rapid decline. You are not alone. Please come back here as often as you like to find companionship.

  • Rodger
    3 months ago

    This article is very good. There does seem to be not much done to help with the PPMS. It seems to be forgotten and ignored by the drug companies, it almost appears that there is not enough profits for them. As I have said I am in a wheelchair because of the external stress put on me from various agencies that I don’t have any control over. I do believe the Ocrevus may help but I’m not holding my breath for it.

  • Mitch Sturgeon moderator author
    3 months ago

    Rodger, I am also less than impressed with Ocrevus. I think it’s a very thin slice of people with PPMS who will benefit. I also think that there are structural problems with the medical/industrial complex which discourages research into the less obscure diseases. I don’t think the individuals working for pharmaceutical companies are so much to blame as is the structure. I’ve got a article growing on this idea. Standby…

  • stumblingbumbling
    3 months ago

    Finally, an article about ppms and its unique box of problems. I had nearly given up reading articles about ms until I read yours. I will mention here that I also have ppms. Perhaps, one day we can have a dedicated format so that we can share ideas and hopes. Your insights are spot on, especially, about the one med that we are not sure if it works or not but we keep going for the infusions. when I viewed their ad on tv I found myself giving the tv the finger in frustration. Thank you for taking the time to write the article. I hope its not the last. Know you are not alone in thought. your friend in misery, Kevin

  • Mitch Sturgeon moderator author
    3 months ago

    hey Kevin, people are coming out of the woodwork in response to this article. Thanks for joining in. Did you really give the finger to your TV? I love it.

  • Phrankie
    3 months ago

    I am another PPMS’er. I am choosing to try to be as positive as possible. I research and implement healthy changes with the hope that these changes will help me get better or at least stop the progression. I have cut out sugar, processed/refined foods, gluten, dairy, ….I am working on stress reduction (meditation). I have improved my sleep by using Cannabis. I take LDN. I am trying to improve my gut health. I am a member of the MS Gym and exercise daily. I am reading about the mind body connection and believe it is possible to heal this body!!!

  • Phrankie
    3 months ago

    I forgot to mention that I also do the Coimbra protocol (high dose vitamin D).

  • Mitch Sturgeon moderator author
    3 months ago

    Phrankie, I don’t know if I share your optimism that it is possible to heal this body, but on the other hand the steps you are taking generally fall in the category of “it can’t hurt, and it might even help,” so I admire your attitude! Good luck to you.

  • DelightedHands
    3 months ago

    Oh, thank you for this post! I, too, struggle with isolation. ‘My sister’s cousin’s best friend has MS and she takes…..’ is so commonly said to me.
    I just say thank you and don’t comment, usually.
    I never get a break from the pain and over-stimulation of my nerves. It is exhausting. Oh, I am mobile still and so grateful for that but I have so little balance and walk like I am elderly and not a vigorous 60 any more! I won’t whine, it was just so nice to read an article about ‘my kind of MS’!

  • Janus Galante moderator
    3 months ago

    DelightedHands,
    To hear that you never get a break from the pain and over stimulation of your nerves breaks my heart and I am so sorry that you’re dealing with that.
    I hear you when you talk about the balance and walking.
    I have so often wondered how I must look to others when walking, but then like yourself, am grateful that I am walking and mobile! Thanks for the reminder! Warmly, Janus

  • Mitch Sturgeon moderator author
    3 months ago

    Delighted, I’m delighted to hear from you. This disease is indeed exhausting and relentless. I’m getting a warm reception from so many of you who are pleasantly surprised to read about “my kind of MS.” Hang in there 🙂

  • Mike Russell
    3 months ago

    Thanks for the thoughtful article Mitch! Great to read another PPMS Brothers view

  • Mitch Sturgeon moderator author
    3 months ago

    Mike, thanks for the feedback. It does feel a bit like a brotherhood, or should I say personhood. Hang in there…

  • Hans F
    3 months ago

    Thanks Mitch for you sharing all your suggestions. You have been quite a help to me personally over the last year. The one part touches me deeply is the mention of dancing. My wife and I used to dance about three times a week ballroom and ethnic (German Polish Latin) it is terribly hard to go to dances now and being an observer without feeling very sad. I even checked wheelchair dancing (difficult with an electric wheelchair) – – not the same. Life goes on everyone says I look so good and have a wonderful attitude. As it is always it is a very different view from the inside out versus the outside in. All the best to you Mitch.
    – – Hans

  • Mitch Sturgeon moderator author
    3 months ago

    Hans, it warms my heart to know that my ramblings have had a positive effect on you. I’ve enjoyed your feedback over the last year or so. Best of luck.

  • Giova
    3 months ago

    Wonderfully written Mitch. You have articula ted all my thoughts, everything that I have been unable to either get out my mouth or write down because of my disease. It has brought me to tears of relief, Thank you ever so much.

    I too have PPMS and am in the UK. Wherever we are from, the issues, with regards to recognition, treatment, willingness to find new therapies and general awareness of PPMS are the same. All the other MS variants bar ours grab all the resources, focus, time and effort.

    Unlike your seemingly balanced and fair opinion on this, I am livid and fuming about it. I have bored to death the few friends I have left because of this disease by going on about this. It feels that as a PPMS sufferer I have been left to rot away. Bizarrely it seems that those with all other types of MS are in some way privileged (please everyone take this in the context of this message).

    It would be easier to get an audience with the Pope than it will be to get Ocrevus treatment. This recently became the first licensed DMD for PPMS in the UK and was announced to the general public with a big hoorah. However the bar has been set so high that the vast majority will be denied access to it. From euphoria to despair.

    So many said to me that I must be happy for this new drug to be available and that I could be cured. Well intended I guess but the naivety of those who said this to me makes me so angry. This because I have explained to them the reality of PPMS yet clearly they had not even bothered to listen and comprehend. Sort of sums up PPMS, no one gives a toss and am left to rot!

    Excuse my ramblings but I am angry, fed up, in pain and am slowly travelling down the downward slope.

    Thank you again Mitch.

    Giovanni
    from a life to an existence

  • Spiritdancers
    3 months ago

    Hugs and understanding from a fellow UK PPMSer who has also been left to rot.

  • Mitch Sturgeon moderator author
    3 months ago

    Giova, your demeanor in the face of PPMS is probably more appropriate than mine. I got my almost unnatural positivity from my mother (who was a quadriplegic from a spinal cord injury).

    Although we are certainly the minority, at least we are not alone in our plight. We have this small community of fellow sufferers. Glad to make your acquaintance, although I wish it was under better circumstances.

  • Coolcow
    3 months ago

    I have had the same reactions to helpful hints from “someone I know who has MS.”

    I have but one drug that slow down progression of PPMS. But how can I tell?

    They seem slightly offended when I don’t thank them profusely for their bon mots.

  • Mitch Sturgeon moderator author
    3 months ago

    Coolcow, you raise one of the conundrums of treatment. How do we really know if the drug is working when we don’t know how much we would’ve progressed if we hadn’t taken it? It’s crazy. I admire you for withholding your gratitude for situations where you feel sincere about it!

  • OliviaJ
    3 months ago

    Excellent piece as always. My shrinking cerebellum, thanks to PPMS, would never allow me to write a piece such as yours, so you are an inspiration, even if a grumpy one at times. I don’t hold my breath for DMTs that would make sense for me (the one DMT that has been approved for PPMS does not). I look after myself as best I can, lucky to have a husband who really helps. And most days I feel life is still worth living. Thanks for your writing.

  • Giova
    3 months ago

    Your words “And most days I feel life is still worth living” kind of sums up my daily battle.
    Regrettably I feel that for me it’s fast becoming an existence.
    I’m another grumpy one

  • Mitch Sturgeon moderator author
    3 months ago

    Olivia, unfortunately your term “my shrinking cerebellum” is only too appropriate. We are both lucky to have spouses who are supportive. It makes such a difference. Thanks so much for stopping by and commenting.

  • littleturtle
    3 months ago

    Thank you..
    I to have PPMS along with a few other #’s# problems.
    I agree with all of you…it made me feel better just knowing you are all feeling the same as I am.
    NOT that you have PPMS but that I am not so alone.
    I have a very slow moving PPMS and i am grateful for that but i feel so out of place almost ignored and that others are complacent with it like it is no big deal.

    Isolated I guess is the word, maybe. Nothing can be done for me so just wait, search and ##it it is dam depressing.
    Sorry to be so glumly.

    Melody

  • Mitch Sturgeon moderator author
    3 months ago

    Melody, no need to apologize. We are in a crappy situation, indeed. At the risk of falling upon cliché, misery does love company. Knowing that others are in a similar situation is comforting, and there’s no shame in that. Thanks for stopping by and commenting.

  • littleturtle
    3 months ago

    Thank you so much for being so understanding. It is very comforting to receive.

    I don’t have anyone to talk to about how I feel. This helped me.

  • Shelby Comito moderator
    3 months ago

    I’m so glad Mitch’s article helped you @littleturtle and as you can see from the many many comments, you are not alone and in good company here. Thanks so much for taking the time to comment and please feel free to reach out anytime you need. – Shelby, MultipleSclerosis.net Team Member

  • michael honeycutt
    3 months ago

    Wow! I have a friend with PPMS and she’s fighting similar issues. I fight RRMS. For the last 8 1/2 years I’ve been getting treated at a Veterans Administration hospital with neurologists that are proficient but not extremely knowledgeable about the latest MS treatments or how to treat multiple autoimmune conditions concurrently. Because brain trumps body, I get MS treatment but nothing more than an NSAID for a rheumatoid condition. Trying to get Neurology to talk to Rheumatology is like trying to get Iran to do a loving waltz with Israel. Each is afraid to discuss a possible combined treatment with some monoclonal antibodies with the other, because they are afraid of the safety profile. So, while there are multiple medications available to the general market, trying to get a doctor to consider changes in those options is frequently nearly impossible. The first medication I was on an interferon base that drove me into a deep depression. The next was a glatiramir acetate concoction that has kept me stable on the MS front but leaves me hanging on the rheumatic side. I truly hope that they come up with treatments for PPMS! You’re in my prayers! Stay as strong as you can!

  • michclaud
    3 months ago

    Michael, I too have RAMS as I call it. Interesting combo. Right now I take Copaxone for my PPMS and Tylenol for my RA. I don’t want to take much else for pain of RA because of the PPMS, too unbalanced already. Lol!

  • Mitch Sturgeon moderator author
    3 months ago

    Michael, I can’t imagine having two chronic diseases, and all the complications that come not only with their interactions but with the interactions between your treatments.

    We need our doctors to be imaginative and creative when dealing with complex patients like you. I think a fear of lawsuits has stifled creativity. I’m fortunate to have a doctor who considers a wide variety of treatment options along with me, sadly, none of which has helped.

    Thanks for stopping by and commenting.

  • baggie58
    4 months ago

    I couldn’t agree more; it often seems to me that it’s as if PPMS (which I have too) and relapsing remitting are two completely different diseases. I get it a lot too, well meaning people conflating the two into just ‘MS’ – my husband regularly comes home from work with ‘tips’ from one of his customers whose wife has MS. What type does she have, I ask. Relapsing remitting. Sorry, not interested, thank you. You know I have PPMS *descends into petulant complaining from me (thank you for ‘petulant’, it describes quite nicely how I fee, as if I shouldn’t be complaining at all) ….
    I’m going to show him your article.

    I can’t get the only treatment licensed over here (UK) either. Mine hasn’t progressed to the extent that yours has, though it makes its steady slide downwards felt suddenly, as when both my legs give way from the knee, previously it had only been one.

    Thank you for this.

  • Mitch Sturgeon moderator author
    4 months ago

    Thanks so much for writing. I agree that they are essentially two different diseases. May your progression be as slow as your transition to Brexit 🙂

  • Kim Dolce moderator
    4 months ago

    Beautifully written, Mitch. I hope to catch you dancing in the streets one day soon.

  • Mitch Sturgeon moderator author
    4 months ago

    Kim, so glad you liked it. I’ll save a dance for you.

  • Mitch Sturgeon moderator author
    4 months ago

    Melody, I will indeed save a dance for you!

  • MelodyBeasley
    4 months ago

    Wow Mitch, so beautiful. I also have PPMS. Can I also have a dance? Take care

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