SPMS - How are we doing???

[foggyrose]

Hi Seasha and all SPMSrs! I'm thanking God for my AC this summer with the HOTtemps we're having this year. It seems to permeate through the house, even with the AC. Your Washington weather sounds good....except for the rain. Not good for the fibromyalgia.

Still having the problem of my legs swelling from immobility with big blister-type things forming, then the lymph running down my legs. I've tried getting PT, but my insurance doesn't cover multiple sessions at home unless there's someone else to train to do them with me. My legs are pretty much useless, so can't stretch, etc., myself. If I could get to the clinic, the insurance would pay. Being alone really is the pits.

Struggling with the "bladder issues" and have come to the conclusion that it's about time to have some help come in maybe twice a day to help me change clothes, etc. Still taking my LDN in the hopes that it's keeping rapid progression at bay. Tizanidine (sp?) for spasticity is the only other MS drug I'm taking. Of course there are others for the A-Fib, Mitral Valve Prolapse, depression, etc. Trying my best to hang in there and keep my independence as long as possible.

Take care and the best health possible to us all.........FR

[dalechilders51]

SPMS

HI everyone, I'm Dale and just found this thead last night. Didn't want it to fade away because this is place i can really relate to. I was diagnosed in 2000 with RRMS and was on most of the DMD's with little effect. In about 2009 I transitioned to SPMS. This transition left me wheel chair bound. I have been on Tysabri for a little over 5 years and seems to have slowed my progression, keeping my fingers crossed. Its good to hear from you all who are in the place with me. I feel less alone. Thanks Dale

[foggyrose]

Hey there Dale....welcome to the group.....but sorry you have to be here too! I haven't been here in awhile, so am catching up on all the threads. Yep, I can relate being in a wheelchair. It's a good substitute for legs that no longer work, but can't help wishing for the "good old days" when they worked just fine.

As far as my present condition goes, afraid it's going downhill even though I continue taking LDN. Been in the hospital a couple times since last month also. With my swollen legs, I have more trouble transferring from my chair to the toilet, recliner, etc. Both times they put me on lasix, continuous IV and wrapped my legs quite tightly. Thank goodness they also put in a catheter as you know what happens with all that fluid!!! When I left the hospital after about a week, my legs were totally skinny!!! Forgot what they looked like before all the swelling began. Of course being home, I'm not on a diuretic, no bandages and it's impossible to keep them elevated all the time, so the swelling begins again.

Have been trying to get some help to come in maybe just two hours in the morning to help me get up, dressed, legs wrapped, etc. So far I haven't found anyone "privately" and the agencies I've spoken with charge exhorbatent (sp?) amounts. The footrest on my powerchair was broken and had to be completely replaced at another huge expense. Guess with all the "bells and whistles", there are more things to go wrong.....but it's great when working properly!

I pray everyone is doing as well as possible with this monster we've been given. Take care...........FR

[raeken]

SPMS and a Newby??!!

First MS diagnosis (three weeks ago) was SPMS. I am hoping to look at you all for some guidence. With only one episode that ever seemed worthy of a doctors visit - was last summer. Numbness in both legs and torso. This summer it came back with numbness and and tingling to the top of the head. Which led to the first Neuro visit and a diagnosis of SPMS. Doc says since the symptoms haven't gone away in over three months, it is not RRMS. However, they continue to improve slowly. Now the question is meds...Everything I read on the meds says not for SPMS (except for one) yet everyone seems to take them for sometime. Why? Is there more to the story or should we accept the SPSM diagnosis and try to treat with diet alone?

[agate]

Hi raeken and WELCOME!

It might be too early to tell if you have SPMS. I'm assuming you've had an MRI?

Not everyone is on the MS drugs. In fact, I'd say that at least half of the people with MS aren't on them and may never have tried them. A message board like this one gives a somewhat skewed picture because the people who post are the ones with questions about their medicine--the ones who aren't on a medicine won't have as many questions.

There are people with SPMS who are on one of the DMDs (Avonex, Betaseron, Copaxone, Rebif). There are many neuros who believe that everyone with MS--no matter what type of MS they have--should be taking one of these drugs.

Even though they've been tested only for relapsing forms of MS, the neuros will prescribe them, probably not because they want to sell more drugs but (we hope) because they have our best interests at heart and genuinely believe that one of these drugs just might help slow down the disease process.

I have SPMS and was on Avonex for 3 years and Copaxone for nearly 3 years. There are many people here like me.

A lot depends on what your neuro advises, and if you'd like to be on one of the drugs but your neuro is opposed, you can always find another neuro.

They seem to fudge a little when they have to fill in forms about whether you're eligible for the DMDs. They have to pretend you're RRMS, apparently, but they seem to do that willingly enough. At least I've known of at least four who have done this.

[dalechilders51]

SPMS

Welcome raeken. I've been SPMS for several years. Iwas on Tysabri before my transition and am still taking it even though I'm JCV +. All I know is that it stablized my progession. I guess the thought being that SPMS could also be RPMS with subclinical flares. I sort of agree with others that its better to be on something. Diet, excersize, and rest are important as well vitamin supplements. Best wishes Dale

[fishead]

Bump for this thread. It is helpful to read what other SPMS'ers are battling

[RUBBERBANMAN]

IV STEROIDS

I HAVE ASKED MY NURO ABOUT STEROIDS BUT HE SAYA IT WILL NOT HELP ME.I THINK IT WILL CAUSE SO MANY SAY IT HELPS.I WAS DX IN 99 AND IN SPMS, I WISH I COULD CONVINCE MY NURO TO PUT ME ON THEM.

[Seasha]

Hi fellow SPMSers and PPMSers! I started this thread years ago and thought I'd bring this back to life after all this time.

I'm sure there are new people here since then that have transferred to SP or PP and would love to hear how you're doing.

Do your have SP flares still and if so, what meds are you taking? Is it helping?
Do you just take meds for symptom management?
Are you learning to do things differently - How so?

I have added baclofen in the last year due to leg spasms and if it gets severe, I take tizanidine - usually at night. I am also exclusively using a rollator walker and have a motorized scooter. I have to admit that sometimes I still mourn the old me and what I could still do - even from 10 years ago. But mostly, I'm OK with what is- realizing that I can't measure my life on my achievements or lack thereof. Aging along with MS has mellowed the need for me to keep doing, instead of just simply being.

All in all, after having this for over 31 years has taught me valuable lessons that I'd probably miss out on if I didn't have these challenges. I have slowed way down, but it has given me more time to enjoy the small wonders that I probably missed out when I was racing, scurrying through life. And with that comes a host of blessings

Just my musings~~

How about you? I think of you all having a progressive form of MS and send blessing to all

[Doodlebug]

Hello after all this time!

Hi fellow SPMSers and PPMSers! I started this thread years ago and thought I'd bring this back to life after all this time.

:

Wow! Looking back at this thread puts me back. The last post on this was 2013!

I'm still puttering along. Don't drive more than a couple miles from my house.
My left side has slowly progressed and I am 95% paralyzed on that side. But still--I am walking & have adapted to still do things. There are tasks that I can do better than someone else not disabled.

Right now my biggest dilemma is to stop Rebif. I am 52 & eligible for Medicare. Once I turn to Medicare, the drug company will no longer pick up the copays. Medicare copay for Rebif for us will be about $6250 per year.

When does a person stop their DMD?

[Mamabug]

Hi fellow SPMSers and PPMSers! I started this thread years ago and thought I'd bring this back to life after all this time.

I'm sure there are new people here since then that have transferred to SP or PP and would love to hear how you're doing.

Do your have SP flares still and if so, what meds are you taking? Is it helping?
Do you just take meds for symptom management?
Are you learning to do things differently - How so?

It's a good time for me to update on this. Actually, although many of you know me and my abilities and disabilities, when this thread was started, I wasn't yet in SPMS. So, although I've talked about SPMS on other threads, I haven't commented on it here.

1. Recap

I've had MS since January 2002; it began with a bang. It took almost 2 years to receive a dx and I began Betaseron at the end of 2003. Betaseron was fairly ineffective for me and my MS was pretty out of control for the two years prior to dx and for the five years on Betaseron.

I switched doctors and meds in 2008. I also lost my third job since MS and applied for SSDI in 2008. I was approved quickly.

Copaxone worked much better for me than Betaseron and, although I continued to have occasional flares, they were much much less severe. They could be managed beginning with 80mg of prednisone, instead of the 1000mg of Solumed or prednisone that had been needed before.

After going on SSDI, I led a somewhat active life (about 15 hours per week) volunteering at various places.

In recent years, I've cut down, significantly, on my volunteering. I suspect that I've been in, or transitioning to, SPMS since 2014. 2014 was the last time I had an MS flare; I had two minor flares that year. My 2018 MRI indicated that I'd had two or three new lesions between 2013 and 2018, so 2014 is when the new lesions likely occurred.

I'd also noticed what seemed like a faster decline in abilities after 2014. In February 2018, I started using a cane when I leave the house. At some point, we purchased a used Drive power chair. I use that when there's a need to walk further than I am able. At this point, I can only walk a block or two.

In June 2018, I began seeing my functional medicine doctor and I made significant changes in my diet and lifestyle. Prior to that, I'd been exercising regularly and eating what was considered a healthy standard North American diet. Now my diet is GF, DF and mostly sugar free. It resembles The Wahls Diet in many ways.

My MS stabilized with those changes.

During COVID 19, although I continued to maintain many of my diet and lifestyle changes, my regular exercise dwindled to almost nothing. My mobility has declined during this time. I've decided that I really do need a combination of diet, exercise and other lifestyle changes. Diet OR exercise wasn't enough.

2. Currently -- No relapses, no new lesions, no more meds

Last week, I had another MRI. It indicated no new lesions since 2018 and I've had no flares since then. I've been in conversation with Dr. Lynch for awhile about going off Copaxone. This MRI confirmed that it is likely that I am in SPMS. Because Copaxone and other DMD's (even those that work for SPMS) are approved for active MS, I no longer benefited from a med designed to prevent relapses.

Dr. Lynch took me off Copaxone. She said that she plans to do a follow up MRI in 6-12 months to check if I continue to have no new lesions.

Copaxone was the only med that I was on for anything. I'm currently taking nothing -- no DMDs and no meds for symptom management, etc. Only supplements.

3. Doing things differently?

Since things have opened up some, I have begun exercising again. I am hopeful that I can regain the mobility that I've lost since March.

I continue to use my cane when I leave the house. I also continue to use my power chair when needed. It's a lot of effort for my husband to load it and unload it from our Yukon (SUV); he sets up a ramp and turns the power on to drive it up and down. I've wondered about also getting a regular W/C or a W/C and rollator combo that he's able to lift. Then I'd have a choice.

4. A helpful link

I read this article. It explains four types of SPMS and treatment options for each of them. I'd never heard it spelled out so clearly and in such an easy-to-understand way. I believe that I have Non Active Progressing MS.

Treatment for Secondary Progressive MS
https://www.webmd.com/multiple-scler...ZfSAeIL2_s#2-4