My Progressive MS Moment of Truth

 My Progressive MS Moment of Truth

“If I were you two, I think I’d plan for the worst,” Amy, my physiatrist, said to my wife and me as we sat in the examination room.

It was just after 11 a.m. on Friday, Jan. 18.

January has become one of two pivotal months in terms of my MS treatment plan, including my first Ocrevus (ocrelizumab) infusion of the year, the first of my semiannual neurologist and physiatrist visits, and initial sessions with my physical therapist. I’ll do the entire circuit again in June.

My wife doesn’t typically accompany me on these appointments, but Amy had relocated to another city, too far away for me to be comfortable driving myself. The two had never met her, and since Amy plays a pivotal role on my MS team, I thought it would be good for them to meet. Plus, the following Monday was Martin Luther King Jr. Day, and we were looking forward to a four-day weekend together.

We had just finished telling Amy what we were planning to do to better accommodate my progressing symptoms, including buying a bigger vehicle to hold and carry the rigid-body, self-propelled wheelchair Amy had ordered for me. After months of drawing up plans and meeting with contractors, we were finally ready to pull the trigger on adding a half-bathroom to the main level of our old home to reduce my trips up and down the stairs and to minimize accidents — of all kinds — along the way.

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Neither of these solutions was inexpensive, but it keeps getting harder for me to walk. I fell a lot more last year, and the stairs in our home seem to be growing in number and somehow keep getting taller.

We had shared our plans with Amy hoping for validation or direction. She diplomatically recommended a mobility van or vehicle, while adding that if we were going to renovate our home, we should add a full bath and bedroom to the ground floor of the house. She just wanted us to invest our time, effort, and money effectively, she said, and that our initial fixes might be short-lived at best.

Her recommendations were wildly more expensive than what we had envisioned. It was NOT what we expected to hear.

Like so many MSers, my diagnosis in 2013 came after years of seemingly disconnected problems followed by a couple of textbook signs of MS (foot drop and special introductory episodes of “bowel and bladder” issues). Aside from being unable to lift my right lower leg one summer afternoon, though, I hadn’t had any obvious flare-ups or exacerbations.

I was 53 at the time.

Initially, my neurologist thought I had relapsing-remitting MS (RRMS). I asked him the standard list of questions trying to get some — any — kind of grasp of what was going to happen to me next and when. He was always positive and reassuring, yet always somewhat evasive when answering my questions.

Anxious to end my anxiety, I spent more than a little time researching disease outcomes for RRMS patients. In my mind, they appeared to be potentially significant but possibly not as disabling as the progressive forms. My symptoms were comparatively mild, my neurologist obtuse, yet positive. Much of what I read about the disease stressed maintaining a positive attitude, too.

I began to think that I might get lucky and avoid significant progression, that my symptoms might plateau, possibly even end altogether, and that mine might be a relatively benign experience.

At the time, that seemed “positive” to my wife and me, and I continued trying to live our new MS lives the best we could. We didn’t have a plan for doing that or know where to turn for help, and in the Sturm und Drang of the disease, we just kept going without one.

My symptoms continued to worsen. By late 2016, it was apparent I had the primary progressive form of the disease. Given my age at onset and the types of symptoms I had, it made perfect sense.

In 2017, I made Amy the captain of my MS healthcare team. Straightforward and funny, she was the first MS-related doctor I connected with. I knew she was devoted to helping me any way she could, and I knew she would tell it like it is.

Until recently, I’ve found the unpredictability of MS, how it develops, how it progresses — or doesn’t — maddening. I’ve learned why it was impossible for my neurologist, or anyone else, to predict my ever-evolving MS. I’ve also come to realize that uncertainty can’t be easy for doctors to explain to their patients and how hard it must be for them to help their patients remain upbeat at the same time.

But that doesn’t change the need to make some very challenging life decisions. Unsettling as it was, we needed to hear what Amy said that morning. Honestly, it gave me a sense of relief. Because for the first time since my diagnosis, I finally have a better sense of what to expect.

***

Note: Multiple Sclerosis News Today is strictly a news and information website about the disease. It does not provide medical advice, diagnosis, or treatment. This content is not intended to be a substitute for professional medical advice, diagnosis, or treatment. Always seek the advice of your physician or other qualified health provider with any questions you may have regarding a medical condition. Never disregard professional medical advice or delay in seeking it because of something you have read on this website. The opinions expressed in this column are not those of Multiple Sclerosis News Today or its parent company, BioNews Services, and are intended to spark discussion about issues pertaining to multiple sclerosis.

Mike Knight Author
Mike Knight is a longtime freelance writer, journalist and marketing communications professional who has written for a variety of publications over the past 20+ years including dailies, weeklies, monthlies and inflight magazines and now, MS News Today and also his own site, mikeknightwrites.com. He lives in Indianapolis, Indiana with his wife of 31 years and two cats and a bicycle he refuses to quit riding. After nearly 20 years of disparate illnesses, he was diagnosed with a progressive form of Multiple Sclerosis in 2013.
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Mike Knight Author
Mike Knight is a longtime freelance writer, journalist and marketing communications professional who has written for a variety of publications over the past 20+ years including dailies, weeklies, monthlies and inflight magazines and now, MS News Today and also his own site, mikeknightwrites.com. He lives in Indianapolis, Indiana with his wife of 31 years and two cats and a bicycle he refuses to quit riding. After nearly 20 years of disparate illnesses, he was diagnosed with a progressive form of Multiple Sclerosis in 2013.

27 comments

  1. B a r r i Himes says:

    I find the comments in this article more related to what I deal with with my progressive MS then any other that I have read. Thank you for your input. I have learned that I need to forecast my future sis symptoms because it’s only going to get worse if I plan for now I wind up having to replan. If I act as if the symptoms have already come like now I’m in a wheelchair I do better. It might not be what I want to hear but it’s what I need to know thank you

    • Mike Knight says:

      Thank you so much for your thoughts and sharing your story. Best of luck each day and thank you for reading my column.

  2. LYNNE HEAL says:

    #MS truths as its so corrupted .Dr. George Ebers, one of the world’s top multiple sclerosis researchers, exposes the upsetting relationship between the pharmaceutical industry, neurologists and MS charities. https://www.youtube.com/watch?v=i0m_isndqc0 The system is all broken everywhere in the UK concerning #MS No one at all is doing anything at all about #MS truths because no one cares who should be doing sadly.

  3. Jeanine Thiede says:

    It would be nice if Doctor’s would give it, like it is, or will be. I am so tired of doing research. My eyes blurr after an hour. I have progressive. I asked my doc what type she thought I had. She said she was not sure yet, but she thought it might be remitten progressive. I not sure if remitten was the right word. When I heard progressive, I could not remember anything else she said. I got diagnosed in August, I turned 58 a few days later. She showed me my MRI and it was loaded full of lesions. I knew something was wrong about 10 or 15 years ago. It started when I could not hold my urine or bowels. My eyes got so bad I could not see the person’s face standing in front of me. I had so much head pain, swelling, heat in different parts of my body. pricks in my feet and toes. shocks up and down my back. No doctor could tell me what was wrong. I had a few mri’s done and none showed lesions.I did get diagnosed with Fibromyalgia and IBSD. So, I settled with that. I started getting full body jerks, mild in 2015 and didn’t think much about it. My sister died in 2016 and I thought I had a nervous break down. I could not stop shaking and my doctor put me on Nerve pills that took care of the shaking, for the most part. I kept falling up my stairs as I could not life my legs up to make it. I could not keep up with cleaning our 2400 three story home. We sold it and bought a much smaller home. No stair’s. In august, I had a bad spell with the myclonic jerks. My head whipped back so hard and so fast I thought my head was going to break off. I called my Nero, and after a lot of tests they found I did indeed have MS.. btw, I kept telling my doctors I had MS but my mri’s did not show that I did. I did find an article that said there are different ways of doing MRI’s. To check for MS, they have to do small slices. So, If they would have done this years ago, I might not be progressive and using a walker right now. I went from walking normal and now barely walking with a walker in a matter of months. I told my husband, I think it is time for a scooter, he said no. So, I spend my time in bed or on my computer in my comfy chair. I sleep most the day now anyway. I believe I have primary progressive. It is life changing and It would be nice for doctors to prepare us for what is to come next instead of the deep dread of what is coming next! God bless all that are reading this and are in the same place!!!

    • Mike Knight says:

      Thanks so much, I’m right there with you (our stories sound so similar!). Best of luck each day and thanks for reading my column, I appreciate it.

    • Dale says:

      I understand what you’re going through Jeanine. I have progressive and all started when I was 58 though took another year before taking it to a Neuro recommended my family doc. Funny, but I went to an acupuncturist to try stopping my leg spasms and after my second visit she said she felt I may have MS. That was my first eye opening and now at 65 all is accepted this is a battle from here and make the best of it. At least the battle is without pain, just no balance and no leg strength. I’m thankful to have a wonderful wife that totally supports me. Good luck with your struggle and try not to let it get you down. Just take it a day at a time.

  4. Kenyon gibson says:

    Nail on the bleeping head my life lately age and symptoms time to cowboy up and accept my new life and move on doctors try and say I’m wrong but after your article I no my fate always head held high

    • Mike Knight says:

      I think it’s just another reminder to try to get as much out of each day that it’s NOT the worst. Best of luck and thanks for reading the piece, I appreciate it!

  5. My first symptom occurred in a university library when I was 27 as I was looking out the window. I saw two horizons. My husband and I went to a doctor. He said it was all in my head. I knew it was but not in the way he meant. Over the next years, maybe 20+, my husband and I worked hard to replace physical activities that “disappeared” with equivalent activities by devising different physical activities to practice addressing the deficit. And that’s the way it went for years, literally, a waxing and waning of capacity. Then
    when I was 66 and teaching at my third university, I exited an elevator early in the morning and “fainted”. When I came to I crawled to my office, called my MD who said I probably had a stroke, but to get to the radiology dept and get an MRI. I did. The number of white matter and subventricular plaques was remarkable and the radiologist said it was probably MS.
    After that point and for several years it seems everything physical I did devolved into an effort to try and do it without much success. Nobody recommended a drug as there wasn’t much big PharMa interest in MS or even knowledge about it. Nobody seemed much interested in my complaint list especially about fatigue.
    ….Finally this year, my 79th, as my ability to simply walk became impossible I saw the neurologist at my institution who suggested Ampyra (dalfampridine) and it has worked a miracle. He also said I have systemic progressive MS now. That does seem to be the case. But like you all have said, he cannot promote a prognosis.
    I am now almost 80 years old. Due to the extreme fatigue and being expected to do more than I should or even can mostly, I have made out my will. I am slowly dispersing my belongings. I am, however, still able to paint, so am doing much of that to my greater pleasure.
    I have one daughter who understands my frustration and acceptance of the roller coaster. But not the other two. I have accepted that people really have difficulty understanding what they themselves have not experienced. That is O.K. as I do not wish this on anyone for any reason or anytime.
    I wish you all well and I hope you consider complementary and alternate therapies to include mindfulness and mediation, massage and accupressure and accupuncture. Read as much as you can (Why is blurry vision a constant, anyway?) and listen to wonderful music. I do this as I can afford. It is wonderful, I have to admit.

    • Mike Knight says:

      Thank you so much for sharing this truly inspirational story. Thank you also for reading my column, I appreciate it and wish you the best!

      • Jennifer Bodurtha says:

        I am turning 57 in March and have had MS for 30 years. All the comments are inspirational and just wanted to add my experience with low saturated fat diet under 10 grams per day and vitamin D of 2 units per day and multi vitamin. Learned that I am allergic to beef since it makes my right eye blurry. Rec reading Dr. Ira Swank’s MS diet book. Fatigue is my worst symptom, and can’t do drive anymore. Awareness while driving has deteriorated. Thanks for the post and best health to everyone 😘!!

    • Anita says:

      God bless you. In spite of all those issues, your mind is sharp as a tack. I’m glad you have one daughter that understands your frustrations. Keep painting and listening to beautiful music. Wish you the best.

  6. Rashmi says:

    I just want to thank everybody for taking the effort to write out your feeling, and still not indulging in self pity… I am struggling with emotions with each new symptom,and and at my wits end trying to be positive…

    Your article and all the responses make me realise that I am not alone…and to find the strength to be positive.

    Thank you so much.
    Rashmi Jose
    (India )

    • Mike Knight says:

      Thank you, Rashmi, you are definitely not alone with either the disease nor struggling with your emotions. I struggle with mine all the time and am guessing others do, too. Thank you so much for sharing your thoughts and for reading my column, I appreciate it and wish you the very best of luck in the coming year!

  7. Linda Sasser says:

    Your reflection speaks to me. I won’t go into the long, long tale of attempting to find out the problem. It is enough to say that I was diagnosed with MS eight years ago, at age 70. The progression of MS afflictions has progressed slowly (for which I am very grateful), but given my age and the nature of MS, I do not know what the future holds. I would like to continue where I am, doing what I love to do, staying physically active, but is it wise? I don’t know the answer. Due to balance/gait problems, I slipped and broke an ankle in early September, nearly 6 months ago. I have since added a handicapped ramp to access my house because stairs are very difficult and probably unsafe at present. Should I make other changes? Should I relocate? Will I ever return to walking without assistance? Will my MS symptoms continue to slowly erode my independence? So many unanswerable questions.Is it any wonder why those of us with MS may experience depression or anxiety?

    • Here are my comments: I was diagnosed in 2002 at age 54. I should have started an immune modulator drug right then but I waited a year. During that time my walking became more difficult and I was falling a lot. Started Rebif in 2005 and was working only one day a week. All of this helped, especially to reduce stress. Now I use a rolling walker or a scooter and I have hand controls in my car. I lead a pretty active life although travel ( Europe, etc.) is difficult. Two things have helped greatly: one is CBD oil and medical marijuana for the nighttime cramps and spasticity; the other is a diet rich in plants–fresh fruits and raw vegetables. No gluten, no dairy, etc. Read books by Terry Wahls and the Medicsl Medium. You must do this for a minimum of 6 months and perhaps you 2 years to see a difference in your condition but sugar and fried foods are the worst. Also important is a good 8 hours of sleep each night. Good luck everyone!!! Elizabeth Cohen

      • Anita says:

        Yes, sleep and minimizing stress is key. When I was losing my mom and later going through the same with my dad, I would wake up throughout the night with body tremors. Once they passed the tremors stopped. But now, no mom or dad.😢

    • Anita says:

      I feel your concern. Diagnosed at 55 with primary progressive and will be 60 in a couple months. I too have been progressing slowly with gait and balance problems. I also fell one year ago in the garage due to something stupid that I did and fractured my pelvic bone. I went to physical therapy for a few months. I was consistent starting 3x weekly for 3 months and then going to 2x for an additional two months. I got stronger and felt so much better. I challenged my therapists to really focus on my strength and balance. I personally would recommend trying that. I think staying active for as long as you can is critical. I also try not to get overwhelmed with things that I need to get done for the day like taking care of my dogs/cats, cleaning, laundry, shopping, etc. I do one thing at a time at my pace. Just take it easy. Best wishes to you.

  8. L.R. Holly says:

    Literally the best column describing my life with PPMS that I have read! I was diagnosed in 2014, a month after my 60thg Birthday. A roller coaster ride is the best way to describe it. I live with my youngest son, his wife and 2 daughters. They are my God Sent Angels. My daughter in law has read enough about the illness to at least be empathetic about what I’m dealing with. My granddaughters have had the blessings of high intelligence and the reading, with Grandma, about MS. We believe my son is still in a peculiar state of semi-denial. Although he has driven me to some medical appointments and has not demanded much of me around the home, he has never spoken to me or asked any questions about what is happening. It makes for a very strange dynamic around here. I pray the best for you, all of your readers and myself as we deal with the uncertainty of our futures. Enjoy and LIVE each and every day!

  9. Matthew Green says:

    Your article is inspiring and helpful. Thank you. I was diagnosed with primary progressive MS ten years ago at 42 years old. My symptoms had been developing for about 8 years by then. At first it was left leg weakness (very faint), then foot drop in my left foot and increased leg weakness, bladder issues and fatigue. My right leg is starting to weaken also. I’m now 52 (53 in a few days), and my mobility is the biggest hurdle. I use a cane or two walking sticks whenever I’m outside. MS can be depressing. I just don’t want to think about what might happen down the road. But as you say in your article, I must. I’m single and have no family close to me. So I feel like I’m fighting this alone. I’m still working and am seeking accommodations at work, which can also be scary. I teach, so my job is not particularly physical although it can be mentally taxing and fatigue does get to me at times. Still, I want to work as long as I can. Your article confirms that I need to be proactive. But there are so many things I still have to figure out: (1) what do I need to do to prepare for life in a wheel chair; (2) what other symptoms may come up and what types of adjustments must I make in my life in terms of living arrangements, (3) what will it look like for me if I must stop working and go out on disability leave? Who should I speak with to get answers to these and other questions? The thing is I’m not sure who to ask. I found an MS support group in my area and I attended a few sessions but when things got busy at work, I stopped going. I want to start attending again. One big problem I’ve battled with is not exercising (to the extent I am able) and eating too much. Food has become my one comfort. But I’ve gained a lot of weight and need lose it but it’s so hard. I want to have it all together but there is so much about living with MS. I just pray things work out and that I do the best I can.

    • Anita says:

      I would recommend losing weight. It is going to help you. I had commented to another MSer above that I fractured my pelvis and how much physical therapy helped. What also helped is I lost 25 lbs. I began losing after a 3 day hospital stay (food was horrible) followed by a 7 day stay in rehab where they served healthy food and smaller portions. Once I got home I noticed I didn’t have that appetite that I used to have and I just continued. Watch your portion size, eat protein (muscle likes protein), avoid sweets (donuts, pancakes, ice cream, etc). Just stay away from the bakery and certain aisles in the grocery store. What drove it home for me one day, I was in physical therapy and we started working with hand weights. I had a 5 lb weight and it was heavy. I said I can’t believe I was carrying around 5 of these on my body. Try it. That will bring it home to you. Your MS body hates extra weight. Do yourself a favor and lose it. Best wishes to you.

  10. Bob Holterman says:

    I feel compelled to comment even though I usually do not. Because we all experience different progression of this disease I will only comment on what I do.
    I have primary progressive MS and had since 2004. I have come to realize early on that there is no cure. It has a profound impact to get this understanding because for me it meant putting all my mental effort on finding ways to make life easier going forward. A few comments.
    1. A chair lift is $5000.00 and this is one I can use standing on the foot rest and not using the seat. It is more of a escalator! Much cheaper than adding on to our house!
    2. I have a regular power wheel chair ($8,000.00)that i no longer use. I instead have a travel 3 wheel scooter ($800.00)that can be taken apart in 45 seconds and fits in a trunk. It is better in the house maneuvering around.
    3. Bought a handicap vehicle ($45,000) that was not new. It is really easy and put hand controls ($225.00) on it that can be taken out if I need to drive another vehicle. I could drive using a wheel chair if needed.
    4. Did Stem cell using my own stem cells from my stomach. ($45,000). It appears to have stopped my MS progression based on MRI comparisons. It did not cure the MS but it did stop it and eliminated all bladder issues and improved strength. Ocrevus is thought to stop MS progression also but was not available 2 years ago. Stem cell treatment was all out of pocket and Ocrevus has insurance coverage. Ocrevus is ($140,000) for just 2 infusions? What the heck!
    4. I stretch out 2 times a day. Really helpful! Also, have a really good massage therapist every 2 weeks. Cheaper than a lot of things.
    5. Became my own medical advocate. I was sick of appointments that only assess my symptoms. I know what they are so very little value.
    5. Got a hip flexor belt and straps ($225.00) that helps a lot for foot drop. Have gone through 2 walk aides ($4500.00) each. Loved it and helped a bunch but they do not last forever if you are active. May get another but all out of pocket cost.
    Take home message is to be your own medical advocate, concentrate on things you can do today to make life easier, stop worrying about the future which only causes stress. You are more likely to be in a car accident than die from MS. There is no cure for MS today. When I accepted this it allowed me to live again.

  11. Bara Robin-Fern says:

    Kevin Keplinger

    What is HSCT?Husband has SPMS for 40 years- started having gait, balance , urinary probs this past year.
    Now problems walking.

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