the progressive nature of ms: Hi all... - My MSAA Community

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the progressive nature of ms

Sandydemop profile image
30 Replies

Hi all, could use your help. last year at the MS walk in April, i noticed instead of walking around the loop 3 times like the year before, I had to stop and rest, not making it all the way around the course even once. Lately, in the last 2 months, I have gone from unassisted to a cane to a walker. I do everything i can think of: exercise, Physical therapy, vegetarian, DMT (Aubagio), acupuncture. Today I noticed I had to pick up my leg to get it in the car. Recent MRIs show no change. My doc said this (coronavirus) is not the time to switch to the infusion drugs which i wasn't crazy about anyway.

so what i need help with is this: Do i accept this as secondary progressive? what choice do I have? I mean what can I do now? I was diagnosed 10 years ago with cog fog secondary to MS and the MS was otherwise invisible. Am I missing something? thanks in advance for your feedback.

30 Replies
rjoneslaw profile image

Can u just switch to another med maybe a pill since that one isn't working anymore?

kdali profile image

I hope you figure it out and let me know! I’ve been wondering the same thing, while I watch myself start to dip my (numb) toe into areas that have never been a problem before. My issues are certainly not age related brain shrinkage. I feel like you know secondary once you are halfway into it.

My MD offered me a drug change when we assumed my issues were a relapse and that was 3 weeks ago.

I hope you get sorted!

Sandydemop profile image
Sandydemop in reply to kdali

thanks kdali you too. Not sure what comes next but this is definitely not age related.

RoyceNewton profile image

I do not think so, it is the progressive nature of this illness. No matter what you do, sadly you are eventually going to lose. It may be a little may be a lot. Think of how bad it might have been without your positive behaviour and actions so far. Keep up the good work as best you can.

Sandydemop profile image
Sandydemop in reply to RoyceNewton

thanks RoyceNewton I would like to disagree with you. I want to have some control over how this goes. Doing everything I can is not enough, right? But you are probably more peaceful about the progression than I am.

kdali profile image
kdali in reply to Sandydemop

We will never know how much our efforts, or lack thereof, have influenced our disease course. Perhaps you have yourself time, or an eye, etc.

nicolette527 profile image
nicolette527 in reply to Sandydemop

I too would like to politely disagree. No two MS'ers are the same and not all progress. My mom was diagnosed when she was 22 with what was called back in the 70's "galloping MS (SPMS)" and was wheelchair bound within 5 years then passed away when she was 41 from complications of MS. I was diagnosed with RRMS was I was 29 after being told my whole life MS wasn't hereditary.

BettysMom profile image
BettysMom in reply to nicolette527

It sounds like your mother has primary progressive MS, not SPMS. But you are correct. Not everyone "is going to lose" as Royce said. Many people never progress past mild disability, especially nowadays with all the disease modifying treatments.

Sandydemop profile image
Sandydemop in reply to nicolette527

Hi nicolette527 Similar story. My mom was diagnosed in her 40's. I got to 48 and thought i got away without getting it...until I didn't.

Bwine profile image
Bwine in reply to RoyceNewton

I had a neurologist tell me that you “do not automatically progress from RRMS to the next stage.” I was diagnosed at 22, today I’m 47 and I still have RRMS. So it isn’t automatic that you “lose” as you called it, it depends greatly on each individual. We’re all completely different. Plus, no one wants to hear that even if it were true! Let’s not be a Debbie Downer.

RoyceNewton profile image
RoyceNewton in reply to Bwine

yes could have phrased better, after 20+ years I have not progressed either

Sandydemop profile image
Sandydemop in reply to RoyceNewton

good to hear!

Sandydemop profile image
Sandydemop in reply to Bwine

Hi Bwine What are you doing to keep well?

Bwine profile image
Bwine in reply to Sandydemop

Hi Sandydemop I’ve been on Rebif for the last thirteen years and I took Avonex prior to that. When I was diagnosed in November 1995, I never even went back to that doctor or any other doctor for four years. (Which during that time I got married and had a baby.) All my other doctors convinced me I needed to see a neurologist and recommended one for me. I truly have been blessed. What kind of treatment are you on?

Sandydemop profile image
Sandydemop in reply to Bwine

I'm taking Aubagio for maybe three years and Ampyra for about 2 years. I started on copaxone but symptoms started to break through after 8 years. Then Aubagio. I was glad to switch to an oral medication but i'm in a flare up now. Maybe secondary. Glad you are doing so well.

greaterexp profile image

It may be tine to have a thorough discussion with your neurologist about progression and if by switching meds, you may be able to reduce or delay it.

Let us know what you decide.

erash profile image

Your story sounds like mine. I will keep doing all I can to fight (nutrition, exercise, meditation, sleep), accept and adapt to the changes (be grateful for my walker and bioness) and remain hopeful and resilient 🌈🤗

Sandydemop profile image
Sandydemop in reply to erash

Hey erash we are MS warriors, right? thanks for the validation. How are you adapting to the changes?

erash profile image
erash in reply to Sandydemop

Adaptation is like a roller coaster...some days acceptance and some days resistance.

pamgarner profile image

it is hard watching it change,please have a discussion with your dr"they tend to talk textbook,we are all different"and I am not saying this is all of it but the heat is killing me this year even in doors, it makes me so much weaker and to you

Sandydemop profile image
Sandydemop in reply to pamgarner

thanks pamgarner The heat has been very difficult. July felt like hell. What is making me weaker also is not getting out and exercising every day. I am much weaker than I was in March. Wishing you well too.

leking1 profile image

I'm sorry you are having to deal with this. We all are, to some extent. Between the heat, and the pandemic, and stress surrounding all of that, my MS has been much more visible and has been out of control for several months now. And No, I didn't know I was in SPMS for about 5 years after it changed....and that was over 10 years ago. Now that the Neuro's have identified the the new symptoms, I know when there are new ones. Take care of you, stay cool, and calm. You WILL feel better when the temperature cools down! Then we can deal with the other stuff! Linda

Sandydemop profile image
Sandydemop in reply to leking1

Hi leking1 Amen to that sister! Today feels cooler and I'm grateful for that. Might even be able to take a walk before 8pm. So how did you manage that time 10 years ago when the symptoms started worsening? I feel scared out of my mind. I want to go back to the way I was before. Thanks Linda. I know RoyceNewton would say there is no going back. Maybe I just have to make sense of it. It's taking me time to adjust.

leking1 profile image
leking1 in reply to Sandydemop

I tried to ignore it as long as I could, but that doesn't work very well! I think I went through all the stages of grief! Anger, bargaining, denial, more anger, finally some acceptance. The hardest thing of all to accept was my Neurologist, a MS specialist, telling me that I HAD to retire from work, or the next time she saw me it would be in a nursing home!

Bless her heart, I was not an easy patient, and I suppose she had to say that to get through to me I was/am very stubborn and think I am in control and can do anything ( sound familiar?), but I finally heard her, and after a few months, I did retire, moved from Florida back to NC,

and adopted every stray animal I found and dug up my yard and planted it in flowers! I did work over 30 years after my dx, and I'm still here, so MS won't win! You hang in there, girl!

Sandydemop profile image
Sandydemop in reply to leking1

thanks for your reply leking1 I often describe myself as a difficult patient. I tell it like I see it.

mikey1994 profile image

I was diagnosed with MS over eight years ago. I started with Rebif (that didn't go so well), then went to Tecfidera (much better), but after five years my body wasn't handling the daily Tecfidera doses and my MS was slowly progressing. I started Ocrevus November 2019 and for me it was the best decision. My progression has stopped completely (and quite possibly reversed slightly). I was already immunosupressed prior to Ocrevus. But on Ocrevus I am at the same levels of immunosuppression as prior. COVID has been scary for various reasons, but I have been working from home since March. So overall, for the first time I feel like I am in control for the first time.

Sandydemop profile image
Sandydemop in reply to mikey1994

mikey1994 I hear you! Sounds like the big O was a good decision for you. We never know the path not taken. I have also been working from home since March. What is it like to feel in control? I haven't felt that in a while. Hard to remember. Wishing you well.

mrsmike9 profile image

Has there been a change in your MRI, including spine?

From what I've read there is more change in the grey matter than many neuro's will admit. Probably because the machines that can measure that are so expensive they don't want to invest in them. So even if your MRI shows no change, it only shows white matter and there still can be something else happening.

Best of luck to you.

Sandydemop profile image
Sandydemop in reply to mrsmike9

thanks mrsmike9 My doctor doesn't like to make a big deal of it. She says "We are all getting older." I want to say... Duh!

Sandydemop profile image
Sandydemop in reply to Sandydemop

My spine MRI had two old lesions. But we know MRIs don't always show progression in function.

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