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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

  • rnhviolin
    5 hours ago

    tears of understanding, thank you

  • Mitch Sturgeon moderator author
    5 hours ago

    thank you

  • Shezza
    5 hours 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
    5 hours 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
    8 hours 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
    6 hours 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
    8 hours 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
    8 hours 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
    8 hours 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
    6 hours ago

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

  • Mitch Sturgeon moderator author
    8 hours 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
    9 hours 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’!

  • Mitch Sturgeon moderator author
    9 hours 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
    10 hours ago

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

  • Mitch Sturgeon moderator author
    9 hours ago

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

  • Hans F
    10 hours 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
    9 hours 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
    10 hours 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

  • Mitch Sturgeon moderator author
    10 hours 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
    10 hours 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
    10 hours 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
    10 hours 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
    10 hours 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
    10 hours 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.

  • Shasha
    11 hours ago

    All MS types maybe due to gluten. Lyme/coinfections may happen eventually since the immune system is low. MS may come/go due to what a person eats. A friend drink soy daily…which can block thyroid and is GMO with Roundup. His MS is getting worse. He wants to keep drinking the soy. If dairy/milk hurts someone then gluten may also hurt them. Whole family trees may get hurt differently from gluten. People can heal as they fix the root cause. If people are open to natural help they can heal. Every supplement I tried was like a miracle since my body was so low in nutrients. MS people may be missing the basics for health…and are then put on an MS drug which may not help since they don’t have the foundation to heal. No gluten/GMO helps heal my gut lining along with LDN and then I take supplements…vitamins/good oils/minerals…probiotic…LDN..detox. The probiotic helps good bacteria multiply B vitamins aind more. Gluten/dairy/soy/sugar/GMO/food with a label/heated oils etc hurt me. Vitamins/minerals/good oils help rebuild my cells. Doctors may not mention gluten and some may have low thyroid due to gluten, but are never given thyroid medicine. Doctors may not mention Vit B12 methylcobalamin shot which helps bones/myelin. I had to figure out what helped/hurt me. Doctors may not have time to do more than give a drug, but that may not help fix the missing Zn/detox etc.. People can heal and can learn how to help their health. LDN may help 99% of MS people, but neurologists may not offer it since they want to give the $5000 a month drug. LDN is less than $1 a day and may help like a miracle.

  • littleturtle
    11 hours 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
    11 hours 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.

  • michael honeycutt
    11 hours 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
    7 hours 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
    11 hours 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
    2 weeks 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
    1 week 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
    2 weeks ago

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

  • Mitch Sturgeon moderator author
    2 weeks ago

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

  • Mitch Sturgeon moderator author
    1 week ago

    Melody, I will indeed save a dance for you!

  • MelodyBeasley
    2 weeks ago

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

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