What I should’ve been told about clinically isolated syndrome and MS

Everything I wish I'd known but was too trusting to look up after my diagnosis

John Connor avatar

by John Connor |

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In 2007, at age 47, I had my first-ever consultation with a neurologist. It was during my longest-ever hospital stay, as of then — a whopping eight days. It amazed me that some of my fellow patients in the ward managed to gather themselves and struggle outside for a ciggy, despite being seriously ill. To be fair, though, they were at least getting some exercise.

In the National Health Service here in England, hospital wards are reminiscent of the army during basic training, minus the bunk beds. If smokers were allowed to puff away on top, though, there’d be no shortage of volunteers — even if they stood no chance of making it.

My medical tests seemed never-ending. Nobody hinted at what was the matter with me. All I knew was that I’d had some tingling in my left arm and my balance was way off, which was confirmed by me thumping down on a tennis court and wrecking my right shoulder.

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I wish I’d known the odds

The avuncular neurologist told me reassuringly that I had a single sclerosis, which may or may not develop into multiple sclerosis (MS). He advised me to keep any life and medical insurance policies. Fortunately, Saint Jane (my wife) was also present. So when I suggested canceling mine much later, she quickly talked me out of it. That turned out to be the worst idea I’d ever had. My best was marrying Saint Jane.

A single sclerosis is actually known as clinically isolated syndrome (CIS). It’s possible the neurologist mentioned this — though even then, I’d always latch onto obscure medical terminology. What the doctor didn’t mention was that I had a 60% chance of developing MS within a decade. All my neurologists tend to be positive. I have a feeling that imparting bad news all day would be too soul-destroying. In my experience, MS nurses are the pragmatic ones.

After the CIS diagnosis, I wasn’t offered any treatment or follow-ups. I was on my own.

I didn’t know this at the time, but because a brain lesion was present on my MRI, I actually had a 60% to 90% chance of developing MS. I was no gambler, as a university statistics course had at least made me aware of the futility of it all. I’m pretty sure you’ve got the same infinitesimal chance of winning the lottery whether you play once in your life or enter regularly. And to win it more than once means entering multiple lotteries. Sorry if I’ve taken the fun out of it for you.

After I was discharged home, instead of hitting the net to research, I plunged back into my hectic showbiz career. Thinking positively, I madly even went back to playing a bit of tennis. I was determined to be one of the lucky ones.

I wasn’t.

Eventually, I learned to research heavily and question everything. Somewhat ironically, being an awkward patient made me a good one.

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, and are intended to spark discussion about issues pertaining to multiple sclerosis.


Leslie Flippin avatar

Leslie Flippin

Well..I have made it to the age of 76 in July. I can't believe all the changes I have gone through since I entered my seventies. I really started noticing changes in my gait/walking. The left side of my body is the weaker and causes me to not pick my left foot high enough to not trip or fall. It is so frustrating when walking on an uneven surface. I am in physical therapy for my gait/walking and have wonderful therapists working with me. They are strengthening my legs, especially my left leg. This included my knees and ankles. Getting up from a chair,or sitting position is so hard for me and scary at times. I pray I can keep on walking. They wanted me to try using a cane, but so far I don't want to give up my ability to walk on my own. My precious daughter bought me a trekking stick and I do use in the back yard which is uneven. I fell a few months ago in the back yard and hurt my head. This was my third fall recently and I have a pinched nerve in neck, shoulders down into arms hurt terribly and spine and back. When I fell I broke my bottom back jaw tooth and had to have a crown put on it. This same tooth is still hurting and I will be getting a root canal on it tomorrow. If there is a crack in the root, then I will be sent to an oral surgeon. My balance has worsened this past year after the COVID, which I had twice. People be very careful when walking, i Stay on alert all the time. My family is so very helpful and I cannot say enough good things about their alertness for me. The bone density test given a few weeks ago tells me I have osteporosis and I have lost some heighth, from 5'71/2"to 5'6".....So sad. All I can say is KEEP MOVING, Pick your feet up and BE ALERT!!! And if you have fur babies, be extra careful. From what I have heard, I have made it to the normal age liimit for MSers. I won't give up. God Bless You and Keep on Trekking,,,,,,I am......Leslie I am not on MS shots, pills. etc. Watching my diet better after 22 years on MS meds. Trying not to take any MS meds because I have reached the age where I have done what I probably am supposed to be doing.

Angela V. avatar

Angela V.

Hello - I am Angela 34 years old, and recently diagnosed with MS. I have multiple lesions in my brain, and (5) lesions in my spine. My most recent flare up was scary, and led me on a journey to eventually get an MRI; leading to diagnosis. I immediately started an Anti Inflammatory Diet - No Dairy, Gluten, Sugar, and/or Nightshade Vegetables. I do not drink alcohol - sober for 3 years - and I believe this helped me a lot. I am fearful that my next flare up will leave me disabled. Currently I am not on medication, but have been fighting for Kesimpta to hopefully prevent another flare up...we will see! One day at a time.


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