Defining primary progressive MS.

[Fancy59]

After spending the morning researching Many prominent sources, such as The national MS society, my MSSA, Cleveland clinic, John Hopkins hospital, The University of Kentucky neuro science center, And Cedar Sinai clinic just to mention a few They all had a common thread or definition.

They all stated that primary progressive MS was an MS that Progressed steadily from onset. In other words as soon as you were diagnosed you steadily declined with disablity without having any remittance or relapses and as involved relapsing and remitting MS. So if your MS started out as relapsing and Remitting MS where you had periods of flares or worsening of MS followed by remissions where your MS improved then you could not be diagnosed as primary progressive MS ever.

I am not a doctor trying to give you advice about your MS I'm simply repeating the statements given by the above MS Professionals. I'm also not trying to tell you your doctor is wrong I'm just trying to tell you to research what they are telling you and ask questions the next time you go in to see your doctor.

I am currently in secondary progressive MS. It is not uncommon for people who start out as relapsing and remitting MS to slide into secondary progressive MS years after they were diagnosed. I have a slow but steady decline in my disability and my walking is very severely affected. About 10 to 12 years ago I had a steady decline in my disability. My walking was severely affected as was a pronounced period of continual falls. It was a girlfriend of mine who was a physical therapist who noticed I wasn't having any relapsing or remitting going on and stated I should talk to my neurologist about the possibility of me advancing to the next stage of MS. When I checked sure enough I had advanced according to the disability scale to secondary progressive MS. I switched Neurlobgists and he put me on Ocrevus. It slowed down and stopped the continual slide I had going on with my disability. That is just one of several medications market that might help with secondary progressive MS and primary progressive MS besides relapsing and remitting MS. There are other DMT's on the market today that help with secondary progressive MS and cut down on the slow but steady decline you have with your disability. Check with your neurologist to look at the options that are out there today.

I hope this helps clear up the definition of PPMS or Primary Progressive MS. If not I hope this has inspired you to research the topic and take notes and take these with you to your next appointment to your neurologist and ask questions. Knowledge is power. Fancy59.

[Sandydemop]

thanks Fancy!

[Fancy59 CommunityAmbassador in reply to Sandydemop]

You're very welcome and I hope this helps Sandydemop. Fancy59.

[Sandydemop in reply to Fancy59]

my experience is similar to yours. I started sliding into secondary progressive maybe 3 years ago. My doc was not willing to try me on Tysabri due to PML. ad then not wanting to put me in danger of covid with the immune system decrease with infusions. just now going to start Mavenclad shortly.

[bavery207]

That fits with my understanding and experience. Thanks

[Fancy59 CommunityAmbassador in reply to bavery207]

bavery207, Thanks for the post backing up my post. I'm glad it makes sense in coincides with your experience. Fancy59.

[Kenu]

👍🏼🙏😉

[Fancy59 CommunityAmbassador in reply to Kenu]

Kenu, right back at you. Fancy😍👍

[mrsmike9]

That makes complete sense!

[TonyiaR7]

Yes, the information the Fancy59 shared, I also received from my neurologist. I had relapsing-remitting MS and now I have been diagnosed with secondary MS, and plan on starting Ocrevus soon. My neurologist stated that Ocrevus was the best DMT for active secondary progressive MS. I had a bad flare up and everything was affected this October the worst my neurologist has seen in the 20 years she has known me. She was not my first neurologist, I had MS for 34 years and was diagnosed with relapsing remitting MS. I changed neurologist because my local neurologists didn’t know how to manage my symptoms and were not as knowledgeable about the different DMTS.

So i went to University of Pennslvania in Philadelphia (UPENN) in 2001 (for a neurologist and physiatrist) and followed my physiatrist to John Hopkins because at that time i had severe paraspinal spasms and he was administering my Botox injections along my spine . I only trusted him and had relief of those and other symptoms. . . After several years of Botox injections (around 2007) my back muscles started to become weak. I went PT and he gave me the medication i needed to deal with pain i was experiencing. I even had a personal trainer at my gym to keep me strong, and did yoga/Pilates.

But I have slowly declined with problems walking; muscle spasms in legs and feet. We tried a different physiatrists at UPENN, but she was not listening to me when I stated that she was giving me too much Botox. So I stopped and even with exercise and muscle relaxants, my legs worsen. I even had a knee replacement and corrected a contracture in my knee joint. Even after my successful knee replacement, I still declined. Now in 2022. this recent flare up my pain was horrific10+ and my walking became worse, and my paraspinal muscle spasms returned worse than before. Even before my flare up in October, my spasms and pain was increasing in my legs, hip and back. I definitely now have secondary progressive MS. I am praying i can be functional and the pain will subside or at least be chronic (with varying degrees) like before instead unbearable everyday. I co not want to slow down this path. So this is why i am thankful I can start Ocrevus very soon. I had all blood work, now getting MRIs, and still going to PT/OT.

So everyone, try to have a blessed Thanksgiving. I am grateful for Fancy59, and so many people who have been supportive on MSSA (HealthUnlocked) through out the years. I am thankful for the neurologist at UPENN for giving me great professional medical and personal care. She didn’t act like previous neurologists that stated MS was a Caucasian disease as they did in 1988, which made it more difficult for me to find a neurologist in my local area, to diagnose my condition and to give me proper care and not understanding my symptoms. I had symptoms since 1979.

So even though I have progressed significantly more, I am still grateful for hope … hope for a new day, better DMTs and other medications and modalities for management of my symptoms. And I believe a miracle can occur for all of us who have MS, that we will be cured and not suffer.

[Fancy59 CommunityAmbassador in reply to TonyiaR7]

TonyiaR7, I am glad that you went to the University of Pennsylvania and got a world class neurologist behind you. It makes the world of difference when they know the different stages of MS inside and out and they know the medications/DMT's out there that might help.

I love your attitude that you are praying for a miracle to happen. We have to believe that with new DMT's being discovered 2 and 3 per year that they are close to cracking what MS is . Once that is accomplished they can cure MS. Never stop hoping for that miracle/cure while working toward improving your life even if your body is progressing you can fight it all the way and slow it down. Fancy🤗🙏💪😁

[JTZES]

Fancy59,

That has been my belief of PPMS. Since I was diagnosed 12 years ago I have had a number of exacerbations. I think I have been on 9 different DMT's. Every time I had an exacerbations my Doc changed my DMT. I am now on Ocrevus and the large exacerbations have stopped and my MRI's have not changed but I feel my symptoms have worsened over the past 2 years on Ocrevus.

If you want to investigate something you should investigate the different DMT's. Each DMT has a different percentage of success. Some are as low as 57%. If you're not JVC positive Tysebrai is the most effective at 99%.

There have been so many new medications since I was diagnosed and haven't done anymore research on them.

This would be a great tool for new comers.

[Fancy59 CommunityAmbassador in reply to JTZES]

JTZES, It's Fancy 59 and I too have been on multiple medications. I was on Tysbrire for a number of years even though I had the JC virus. That was The only time during my MS career that I actually improved dramatically. Unfortunately my virus count started going up and I was having some side effects after each infusion that really started to Scare me. So I got off that DMT and when My progression slid into secondary progressive MS. Soon after that I changed neurologist and he put me on Ocrevus And it helped to curb my slide into More severe disability.

Not being a medical professional I believe that trying to research the new medications and DMT's that are on the market every year would be rather difficult to understand. I believe you probably should talk to your neurologist about the new ones and see what they would suggest. Fancy59.

[JTZES in reply to Fancy59]

I'm good but I'm sure there is a website that explains them all

[Cutefreckles72]

Hi Fancy59, I have PPMS and the statement from the neurologists regarding PPMS is true. PPMS will disable a person and it doesn't take a lot of years to become disabled by PPMS. I was diagnosed three years ago, I started off using a cane and now I am using a mobile scooter. My balance and walking is a real problem. I now need help getting in and out of bed.

[Fancy59 CommunityAmbassador in reply to Cutefreckles72]

Cute freckles 72 it's Fancy 59. I can't imagine what you're going through in just 2 short years. My decline has been since 2014 and it is killing me and I just again can't imagine what you're going through. Talking about your balance walking and not being able to get out of bed have you ever seen a full view of your MRI head scan? My scan showed that my cerebellum had atrophied or shrunk back away from the cavity it belonged in a good 30%. The cerebellum coordinates a wide range of functions and processes in your body, including your balance and walking. The next time you go to your neurologist it might be interesting to ask him to pull up one of your brain scans and show you your Cerebellum. It might be quite interesting and enlightening for you to see it. Ask. Knowledge is power. Fancy 59.

[Cutefreckles72 in reply to Fancy59]

Thank you. Fancy59, I will ask my neuro about my cerebellum. MS affects everyone differently. I never thought I would be disabled so early.

[Fancy59 CommunityAmbassador in reply to Cutefreckles72]

Me either Cutefreckles72. And my decline was over 8 years not tŵo like yours. But I was avid outdoor person. I rode horses constantly and took long weekends and disappeared on a horse for 6 to 8 hours at a time. I backpacked. I was an athlete and played competitive volleyball. So when this all's hit me and my disbility grew too big to continue my way of life It was really hard on me. I was never a couch potato but I am now and I don't like it. Fancy.😟

[Cutefreckles72 in reply to Fancy59]

I understand. I was a walker before MS showed up. I would walk everywhere. When I was working, my coworker and I would walk during our lunch break every day. I miss walking so much. But I have learned to accept this and use my scooter to ride beside the walkers.

[Sandydemop in reply to Cutefreckles72]

Ugh. I am struggling to get out of bed sometimes and it really upsets me.

[Cutefreckles72 in reply to Sandydemop]

I have to ask my husband to drag my legs to the edge of the bed and then he has to pull me up so I can sit up. Since going to PT, I have been taught how to use my elbows to push myself up. It's a real struggle having PPMS.

[Sandydemop in reply to Cutefreckles72]

yes awful! i use my elbows but only one side holds me up. ugh

[Cutefreckles72 in reply to Sandydemop]

Now that is so true. I know exactly. 👍

[Sandydemop in reply to Cutefreckles72]

i met with my yoga teacher today who encouraged me to do baby cobra to build up my strength and the thing where you lift one leg and the opposite arm. We'll see how that goes. 🤷‍♀️

[Cutefreckles72 in reply to Sandydemop]

See that's the problem. My legs are heavy. It feels like a 50-pound weight on each leg. Now I can lift and kick my left leg, but the right leg doesn't do anything I say any more.

[Sandydemop in reply to Cutefreckles72]

same same. is it deaf or just ignoring me?

[Cutefreckles72 in reply to Sandydemop]

I think ignoring. 🦵🏽

[Sandydemop in reply to Cutefreckles72]

well at least not deaf

[twooldcrows]

thank you ...

[Fancy59 CommunityAmbassador in reply to twooldcrows]

You're welcome. I hope this helped. Fancy59.

[BlanketTime1]

thank you for sharing with us.🤗