My Slide Into Secondary Progressive Multiple Sclerosis

By Nicole Lemelle

2 min read

Editor's note: This article was written and published in 2015. The MS treatment landscape is constantly changing, and you can read updated information about available MS therapies here.

While in nursing school, I was diagnosed at the prime age of 25 with relapsing-remitting multiple sclerosis (RRMS). The diagnosis was quick and to the point. I believe this was because we were on an academic state university campus. I know that typically people have symptoms for years and years before they get diagnosed. I was one of the lucky ones, if you consider that lucky. I returned back to class. I don't think this was normal.

Being diagnosed with secondary progressive MS

I continued nursing school with only small problems. After graduation, I became interested in cardiac rhythm disease management and started working for the medical device company Medtronic, at the time, my dream job. I remained there for as long as I could work safely, which happened to be six years.

During this time, I had been on every medication available to me. But my RRMS had evolved into secondary progressive MS (SPMS). According to the National MS Society, this happens within 10 years and 90% would transition within 25 years. For me, it was just nine years.

It was gradual, not like normal remissions and flare-ups. I had previously stopped driving. So it wasn't just that. My walking became increasingly more labored, until I was wheelchair-bound. I went to a new neurologist and he said I was in SPMS as soon as he saw me in a wheelchair. He said any change in your baseline constitutes progression.

Having to move closer to family

So my life began to look completely different from when I was first diagnosed. Over the next few years, I not only had to quit my job, I also had to move from Washington DC back closer to family in Louisiana. Something I initially dreaded. I felt like a failure. Plus, my husband couldn't move back as soon as I could. So, I was with my loving family for about a year before he made it to Louisiana.

Unfortunately, there is no treatment for SPMS. Currently, I am on a chemotherapy drug commonly used to treat breast cancer. Personally, I find this unacceptable.

My journey with SPMS

I need help with daily tasks. This includes bathing and toileting. But one of my biggest problems is my inability to multitask. It requires a level of cognition I no longer have.

This has been my journey with SPMS. It has been cushioned with love from my husband and family and eased with humility.

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.

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Member
I too am on a chemo drug for my SPMS. I am on cytoxan. I have only had one infusion, and unbelievably my walking has improved., I am able to walk with just a cane again. I never expected this, but I will,take it! I wish you the best, Nicole.
2anhpfx Member
Thank you for your story and your incredible courage. Many, many hugs.
allinjay123 Member
Nicole, your story is very similar to mine. I am a retired(medical) Clinical/Compounding Pharmacist. I'm 68yrs old and a male. After receiving my Doctor of Pharmacy, which required 9 yrs of higher education and after nearly 4 yrs in the military, I was finally able to practice my profession at age 32yrs old. I was diagnosed at the age of 35 with remitting MS. Like you, my symptoms progressed rather slowly until I was around 40yrs old. SPMS hit like a lightning bolt and I suffered a loss of many memory/motor skills. My professional career was <a href='http://FK.ING' target='_blank' rel='noopener noreferrer ugc'>FK.ING</a> OVER. Now, as I lie in my bed for approximately 20-23 hours a day EVERYDAY for many years now I too wonder if there will EVER be treatment to reverse SPMS. I probably should change my user name but hey you know I just forgot what I was saying to you hahaha. Best of luck to you sweetheart.
ms_n3pp8k Member
My Dr. has mentioned SPMS but I am reluctant to accept it....I have looked it up & have an MRI & an appt this month so I will discuss this with him. I have greatly declined in the last 3 years (I don't take a step without my walker & use a wheelchair for distances and extended periods of sitting like restaraunts/church etc). I have changed meds 2 times in the last 1 1/2 yrs to no change?? I guess I am reluctant to accept this next phase of my MS journey..I am only 52, and have had to give up so much already that I don't know if I can give up any more...
Member
Still confused with this MS. I thought they went by your MRI to see how many if any new lesions you have to determine how your MS is progressing. Or am I totally misinformed?
1. skcullers Member
 My neurologists, who still does MS research , said they are finding that some people have many lesions and liitle disability while others have few and are extremely disabled so no longer such a correlation between the two.
Member
It's just I went to my MS specialist... Well actually her NP. Anyway I told her I have been feeling worse for a few months and felt like I wasn't able to do things like I was before. I also told her I thought I was having a relapse. She said well let's get the MRI and see what it says... And that was it.
terith Member
Sliding is the perfect way to describe this experience. It's so hard, so much is taken away. And it is humbling, anyone who falls down in public knows that feeling. I'm adding "sliding" to my MS imagery.
hershey21 Member
I saw a comment from 4 years ago by somebody who had some improvement using Cytoxan. I’ve never heard of it. Anybody else had improvement using this?
hershey21 Member
Why are all the comments on here 4 years old?!
1. walterc Member
 Hershey21: I see your recent note, if you check this site still would you please acknowledge?
walterc Member
I’ve been skirting secondary MS for the last 5 or more years, having been diagnosed with RRMS 29 years ago. A cane has helped me with balance but I’m finding I even need to use a cane just getting around the house. Is anyone willing to talk about what their experience is? I still drive, but walking is incredibly slow, exhausting and a bit hazardous. How does one change modes of transportation, or do I really have to consider this?
happygolucky Member
I'm watching trees sway and bend with the rhythm of the storm outside my window. It feels a bit metaphorical to this conversation. When I was RRMS, things felt less predictable. I could usually get a few years of work in here and there and then the storm of debilitating symptoms would come in the most dramatic way. I am now in SPMS. I can't work consistantly. I do volunteer three and a half hours a week at the same non-profit art center that I do my own art work at. It's perfect for me in many ways. Human contact, creative endeavor, and a feeling of giving back. I realize it's not a lot, it's just what I'm able to do. If I add one more thing it's too much. It may sound a little strange, but I find some comfort in the consistancy of my symptoms. At least I more consistantly know my limitations. I know what I have to work with. I take a boat load of medication for symptoms, but most I take at night. There is no medication that I know of to stop the progress of Seconary progressive MS. I wish there were something to reverse it all. It changed my plans for a career after my children were old enough. It changed a lot of things. I was not able to get disability because I was 2 years short of S.S. credits. The financial hardships have been tough. I am however, not unaware that I have it better than so many people with disabilities and I keep that in the forefront of my mind. As I drive to the art center, I pass homeless camps. The weather gas been very cold and wet. I know to well that soon these camps will be cleared out and then where will they go? I'll bet dollars to donuts there are several of them with disabilities and I wonder how they manage. Our town opens warming shelters, and the churches open the doors for people to sleep, but only when the weather drops to 32 degrees. There are opportunities to help, but I can't do it. It really bothers me that I am limited. There are a lot of valid reasons for this, but it still bothers me.
cbailey Member
I also have SPMS. I fought hard for 3 years to keep working, but my neuro won out and I've been 'retired' for 13 years now. I fell 2 years ago and broke my right arm, which meant I'd need assistance with toileting. Luckily, I found a bidet online that works with a remote! It meant that I could still be left alone during the day while my hubby worked, and we all know how important it is to feel somewhat independent at this stage of our illness! Anywho, if you can transfer onto the seat alone, this might be a great option for you! I no longer drive and use a scooter or wheelchair these days. Multi-tasking is still my nemesis, and it can be something as simple as a TV on in another room while someone is asking me a question...and my brain is completely scrambled. Ugh. I hope you're doing well these days! 😀
1. Shelby Comito Community Admin
 Hi <inline-mention user-id="4097199" username="cbailey"/> , this is so helpful!! Thank you so much for sharing what you've found has worked for you. We're thinking of you and are grateful to have you in our community. Best, Shelby, <a href='http://MultipleSclerosis.net' target='_blank'>MultipleSclerosis.net</a> Team Member
2. cbailey Member
 Thanks for your sweet reply, Shelby! <3 I really enjoy the articles from others who are living with MS and how candid they are, as well. It helps all of us feel as though there are others who truly know what we're going through! So, when I have experience to share with others, I'll be posting! 😀
mikeh Member
Hi Nicole. Very sorry to hear your story. I know where you’re coming from. You are not alone. I’m nowhere near your level of progression but I’m aware & can see & feel it happening to me too. I’ve had MS for 17 years. My legs do not work like they used to, very weak pins & needles burn 100% of the time, right hand is 80% numb ( of course I’m right handed) fatigue levels are soo bad & cognitive skills really starting to scare me. Tried quite an extensive list of meds myself also. Nothing works like they say it will. Each med has ended in relapse. My every 3 month 3 day maintenance dose of IV solumedrol is my only look forward to highlight of my my DMD’s. Very depressing it all has been. I can still care for myself but it’s becoming tougher. I do wish I had more supportive words for you besides “you are not alone” but right now I’m at a loss. Alls I can say is try & stay strong, keep your head up & remember... YOU ARE NOT ALONE...Mike. ☺️
hershey21 Member
Yes, I’m still checking. I see new comments. I’m not good at all this but don’t understand why comments were all 4 years ago and now current.
hershey21 Member
I’m wondering if anyone whose been on Cytoxan would please elaborate on what side effects they experienced. Also, what were the benefits. Did the benefits remain after the drug was discontinued?
Donna Steigleder Moderator
Hershey21, I don't have any personal history with Cytoxan but did a search within our database for you to see if we had any stories from the community recently related to its use. Unfortunately, nothing popped up more recently than 4-5 years ago. However, your question might receive more traction for a response on one of our other forums. Try posting it under the Community Forums section related to Treatments. That's where most of the comments about specific treatment information gets batted around among members and you might get more recent feedback there. It's worth a try. Donna Steigleder, Moderator
rusti Member
In 1991 I was diagnosed with relapsing remitting MS. life changed rather quickly I was working a good job lots of hours . They quickly I had to let people know that I was unable to perform some of the duties of my job. I continue to work until 1998. Then thanks became so apparent at work that I knew if I didn't go out on my own , I would soon make a mistake and be fired. I talked with my just and togetherWe made the decision that I should go on disability. Through the years I had kept very good recordsAnd if I had to take a few days off workI had used the MS as a reason. So when I signed up for my social security, within 3 months I was approved. It is so important that Are able to prove That Your MS Is the reason you are no longer able to perform your duties. Then in 2016 I was diagnosed with secondary progressive. Symptoms have come quickly And I find that I am no longer Able to do many thingsThat I could do even 6 months <a href='http://ago.It' target='_blank' rel='noopener noreferrer ugc'>ago.It</a> is important for us all to realize that we are not alone, there are many of us. I lost my husband of 50 years Recently and that has been really hard along with The new symptoms. I do understand that there is noTreatment for secondary progressive MS. But I refuse to give up and I refuse to sit down until I have to. I am 70 years old nowAnd I am convinced that my attitude has served me well. I know the time is coming when I will have to admit that I need to stop. But it's not <a href='http://now.Please' target='_blank' rel='noopener noreferrer ugc'>now.Please</a> try to stay positive and do for yourself as long as you can. I push myself everyday. I am a firm believer that if you don't use it, you will lose it. Keep your mind and body as busy and Involved as you can. I see that most of the on this Site are 4 years old. can we keep The conversation going? And perhaps keep it a little more up-to-date?
loofy Member
I am having trouble with my gelinia medication what happens if you have no choice but to mioss two doses
bodega Member
I think SPMS is the pits in every way. Like the author I was able to cope with a very gradual diminution but once there was no interval involved between signs and symptoms I have been struggling. I can't walk straight, my vision is usually blurred in my Left eye, my speech indicates I am losing it cognitively, it takes me forever to "clean house' usually leaving not time for my art work because then I have to cook. I am incontinent of urine, sleep very badly, am very weak (can't open cans with a can opener or unscrew virtually anything) and it just gets more complex. I wish there was a way to reverse all this. Perhaps there is and I just don't recognize it for what it is. What do you think? I fear the nursing home, literally fear it. I have never had the joy of being in one that truly cared for the people who had to live there. Furthermore, while I value cleanliness highly, I doubt I will ever be "clean" again when I enter one for the rest of my life. I need some hope that my expectations are wrong. Lots of hope. What do you think?
1. Janus Galante Moderator
 Bodega, m.s. is so unfair on any level. As if the physical hardships are not enough it also presents itself in the worst scenario thoughts and then fear. I am so sorry that you are going through all of this. Do you have any support near you? Any family, neighbors or anyone? As for nursing homes, there is always hope. I have had lots of experience in this area with different family members and it was always and consistently positive. Even with family that were located across the country from us. They always spoke of the kindness of those who cared for them. Something that might be beneficial for you if you haven't already, is to speak to your doctor about your concerns. Just as you've done here. I'm also including a link for a help line that I hope will be a positive step for you: <a href='https://mymsaa.org/msaa-help/helpline-chat/' target='_blank' rel='noopener noreferrer ugc'>https://mymsaa.org/msaa-help/helpline-chat/</a> I thank you for reaching out here and hopefully some of the community will chime in as well. Please keep close by and know that we're with you! xxxx's Janus

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