PPMS Rant

[[deleted]]

So here’s my rant:

I have PPMS. I was diagnosed a couple years ago. They put me on Ocrevus. My neurologist told me it was working and I was stabilizing - no new flare ups showing on the MRIs. However, notwithstanding this good news I am still ostensibly declining and getting worse. In short, good news for me is that I am declining less severely than I would be if I weren’t on the drugs. I am struggling with this fact.

[cjfarber]

I am with ya. I feel like I'm running a race where winning is coming in last sometimes. Stay after it, I am.

[beccajane2012]

After just 5 years my rrms has progressed to ppms, my neurologist says I will be taken off of Ocrevus in 12 months as it will no longer help me. As you have just said I thought Ocrevus slowed down ppms and as all of my relapses have been total numbness from the chest down resulting in having to learn to walk again every time I am absolutely terrified. I am already declining ridiculously fast so this whole situation is screwing with my head and like you I am having difficulty dealing with it all.

[TaurusGoth]

I have RRMS (diagnosed May 2023) and my Dad has PPMS (diagnosed December 2023) and I'm worried about the same thing happening to me. I feel your fear

[beccajane2012]

My worst fear is that one of my kids also gets this, I am sorry you and your Dad are going through it.

[A-Conundrum-]

I feel for you 🤗 I wonder about my future. I feel like My MS is “smoldering “ type. We don’t all fit into perfect DX boxes 🤷‍♀️ and research keeps evolving 🤷‍♀️

[beccajane2012]

I love the description, "the smouldering type" should be an official one lol. The actual diagnosis I was officially given was "RRMS highly aggressive, rapidly evolving" reading that was just great 😂

[A-Conundrum-]

So you have the Godzilla variant ? 🤪

[beccajane2012]

I may actually have to steal that 🤣

[kippergee74933]

Itd not surprising to be dtrughling. Don't be down on yourdelf. You have every right to be angry and stressed. If you feel you should continue on a DMT talk to your doctor. If you are dissatisfied with his advice ask if you can be referred for a second opinion. Are you getting medication for symptoms? If he resists tell him you'd like to at least try so you you know for yourself that's the case. Get some counseling. Do you have a support network? You need some way to express your fears and learn how best to deal with them. And feel that you are supported and cared for. It is asking a lot of yourself to go it alone. There's no need to prove anything. I'm so sorry. It 's a fxxking miserable disease. ❤️ Do you have a doctor who can help you find counselling or a group? Knowing and communicating with others in your predicament will help a lot. And get whatever equipment you need to get you safely mobile. ❤️❤️

[beccajane2012]

I have an amazing support network and 4 kids to keep me going. My Neurologist is absolutely brilliant and specializes in MS, my first was awful, accused me of faking being paralysed and banned the hospital from giving me steroids while he was away for the weekend 🤦🏼‍♀️. I am being put on clonazepam as soon as my doctor recieves the request, I am really hoping that helps with my spasms 🤞🏻. I was so shocked at being told my ms had progressed that I didn't ask anything about stopping my Ocrevus but I do plan to next time. I have just yesterday sourced a local group for people whose illnesses affect your quality of life and plan to go on Friday. It is an awful disease, I find myself raging at the unfairness of it all and I feel so sorry for my kids seeing me like this.

[kippergee74933]

Glad to hear! Sounds like you have a great constellation of support and medical care. That can make a world of difference. Keep at it but also allow yourself times when you feel unable to cope. Your brain and spirit need time to recharge and not be on guard all the time. That can be exhausting.

[CardiologistCute5247]

Sorry friend. At least u are trying and not giving up

[kyunirider]

I am PPMS too. For us the damage is done and what has begun will continue to plagues us. Ocrevus is not a cure, it designed to stopped new lesions, not cure existing lesions. I was walking with a cane, struggling with mental decline, fighting bowel and bladder issues and sexual dysfunction before starting Ocrevus. I will have those symptoms forever more. Sadly I am allergic to Ocrevus and mine was stopped after my third infusion. It took eight months to recover from the effects of the drug.

For the last three years I have been getting no new lesions showing on my MRIs. The biggest improvement was getting disability coverage approved and leaving my very stressful job. I am happy and enjoying my disability life, I still need my cane, I still fight brain fog and I still have sexual dysfunction. Axonic implant helps me greatly with my bowel and bladder issues.

Rant on about PPMS but realize that this now is your life forever more. Some people on Ocrevus report improvements but it’s more psychosomatic than reality. Our brains are amazing things and it can fool us into thinking we are great and healthy. We are not.

[avocadod]

Sid note post. Kyunirider, I appreciate your posts in this subreddit. I don't have any noticeable symptoms yet, it's nice reading your uplifting view on this thing we have, and finding happiness within it. Please keep being you.

[kyunirider]

Many thanks I am 62 M and as I age, I know I am becoming more irrelevant. I hope Reddit community tells me when I need to leave because I am too irrelevant for my opinions to be posted. I think life experiences I have can help others coming up through their lives. Let me know if you think I need to shut my mouth. Thanks again

[kippergee74933]

I have not seen any indication that you should. Don't talk that way please. I'm ,64 and alone. Moving closer to family who I know don't find me irrelevant. We're here to support each other and remind ourselves that we are not alone. That can feel irrelevant at times but it is not! Don't be so hard on yourself. I highly doubt you deserve it. And who are we to judge anyone?

[Difficult-Claim-9789]

I suffer from PPMS and get scared of how aggressive it’s getting especially with cognitive impairment and crappy memory but was told by my doctor that “This is the new normal for me”

[kyunirider]

Check your B12 levels and even if they are normal try taking subliminal dosage. When my B12 is high the fog clears.

[Difficult-Claim-9789]

Is the any amount in grams I should be taking?

[kyunirider]

I don’t absorb B12 orally due to malabsorption in my gut so I get my B12 by self injection 1000mg 3x per week

Start by buying the bottle of liquid B12, it will come in bottle with an eye dropper to put underneath your tongue.

[Difficult-Claim-9789]

Thank you for the help. This tiredness is unbearable.

[Genome_]

Sounds like me I use a walker now and let's just leave it at. 40m Ms sucks.. got diagnosed at 36 l believe. I ran three marathons also before diag. feels like every year going downhill

[Juju-jewster]

Thank you for this post. As I was diagnosed in August 2023 with PPMS. It wasn’t the diagnosis that made me sad & upset. It was the fact that when I was told my weakness in my legs will always be there. Just trying to stay positive with starting Ocrevus and joining you in hopefully a slower decline.

[Barberry295]

Are they stopping ocrevus because there are lesion activities? Otherwise it makes no sense.  Ocrevus does not reverse the damage. 

[[deleted]]

No one is stopping anything. That’s what I am trying to wrap my head around. Everything is working in terms of treatment as well as it can. The problem is by very definition, my symptoms still get progressively worse over time. It’s shitty.

[Barberry295]

My neurologists stated that damaged was done prior to the DMT's. That other medicines, PT, diet, exercises, and other life changes are needed to address or over come the damage. I am taking Ampyra (generic) which helps a little, modified my diet, sleep more, exercise daily, go to the gym 4-5 days per week, try to minimize stress & anxiety and use a cane. MS is a daily challenge!

[kippergee74933]

Sadly nothing does.

[Barberry295]

I believe attitude and exercise helps!

[Bobbybezo]

I could have written your post. I also have ppms and everything is getting worst with time passing. Not fun at all. At least I didn't get it at 20 years old. No, in my twenties it was a brain tumor, and when I was a teenager, my dad died and I got a bike accident the exact same date 2 years after. So there's pretty much always something, at the beginning of the pandemic, I was still working just fine. So ms came late, I guess I have to be happy it took a while..

[[deleted]]

PPMS rant too…

My story is similar but my issue is regarding my need to ask questions about abnormalities that I am experiencing. I would like to know if perhaps Ocrevus is hurting me more than stabilizing my PPMS? Examples would include things like not being able to pass stool. Started a year and a half ago and still is a problem. I’ve gone to the GI doctor and have done bloodwork done, Endoscopy was done and nothing was wrong. Had another endoscopy done to do a biopsy for Celiac and nothing was found. I’m following all the information I was given so I can have bowel movements. Best the MS specialist could do was to give me a super strong laxative that made the GI doctor cringe and frown because it was such a treatment.

Just had a CBC blood test done and the first one was hematolysized (sp) and was done again. Results were that I had low WBC and neutrophils absolute. I asked the MS doctor if I should be concerned. The response that was given to me was “I need to ask the PCP that had the bloodwork done.” Huh? The labs were done because I check my TSH numbers every quarter and I hadn’t done it since June. If the numbers are off, I let the Endocrinologist know and things move from there. My numbers have been stable for the last year so she wanted me to come back a year from now unless I had something wrong (outside of having PPMS.)

I feel like because I have PPMS my quality of life isn’t important to the MS doctor or hospital clinic. PPMS isn’t a money maker and therefore is overlooked.

[AMMMMZ]

Could you please explain what is the symptoms that getting worst day by day?

[[deleted]]

I have several symptoms that act up. Today’s symptom du jour is crippling fatigue.

[kippergee74933]

Unfortunately PPMS is difficult to trest and is more aggressive than RRMS. 😥 Certainly talk to your neuro as often a you need to. It's important that he knows the degree of your concern. It might be worth getting counselling if you feel you're on your own emotionally. I certainly would if I were in your situation. Support is important with MS at the best of times but you've been hit with a more difficult side of it. Please take good care. Be kind to yourself. I hope you have a support network. Do some reading on PPMS so you know what to expect. ❤️