Benign MS: Is It Real or a Myth?
What is benign MS? Does it even exist? Certainly it is not one of the types of the disease often listed as making up the multiple sclerosis family.
It is a term that is surrounded by controversy, not least among neurologists themselves.
Some believe that those who go 10 years without a significant disability are unlikely to reach the point where they need assistance to walk. In fact, they also believe people in this category may be able to stop treatment. Many neurologists, however, treat benign MS as a myth. They dismiss the classification and don’t make treatment decisions based on a “benign” designation.
When I was first diagnosed with MS, my neurologist at the time told me several things. My medical records indicated I had MS way back in my early to mid-20s, he said. At the time of my diagnosis, I was 49. He also said my MS was benign.
Because it had taken so many years to develop, he said, he saw no reason whit it should develop faster in the future.
He was wrong.
My diagnosis was 15 years ago next month and, in the years since, the disease worsened more rapidly than in the previous 27 years. Of course, we do know that MS is a progressive illness.
So, what happened in those 15 years?
Walking
2002 – Slight difficulty with dragging left foot. Had to think about walking, every step. Walked unaided.
2017 – Unable to walk more than 10 to 15 yards. Use wheelchair to travel any longer distance.
Standing
2002 – Not affected significantly.
2017 – Unable to stand longer than two to three minutes.
Stairs/steps
2002 – Slow but manageable.
2017 – Two, maybe three, one at a time, holding on to rail.
Getting up from sitting or lying down
2002 – No real issues.
2017 – Not easy but grab handles make it more manageable.
Driving
2002 – Able to drive manual car.
2017 – Only able to drive automatic car because my left foot could not make clutch pedal in an emergency.
Carrying and lifting
2002 – Still manageable but not as easy as it used to be.
2017 – Hopeless. Left hand can’t hold anything and arm too weak to lift. Right hand needs to hold onto something to make falls less likely.
Falls
2002 – Very occasional.
2017 – Much better than 10 years ago, my worst time. Falls are better managed now.
Bladder issues
2002 – Urgency and frequency problems, treated by medication. Wore incontinence pads.
2017 – Same medication, occasional use of pads.
Current health
Today, I know I have progressive MS. Although it has taken a firmer hold over the years, it could be far worse, and for that I am grateful. My most recent MRI (in Russia) indicated that all my lesions are inactive. This means that, while the disease is still with me, it is not rampant.
I certainly feel that moving to Spain, which has a sunnier climate and laid-back lifestyle, has been positive — and don’t forget a vitamin D supplement.
MS still makes an infection far worse, and it is likely to kick in a bout of fatigue. But, heh, you can’t have everything.
***
[You are invited to visit my personal MS, Health & Disability website at 50shadesofsun.com].
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.
Comments
David Kirschner
I was diagnosed with multiple sclerosis in November 1981, MS symptoms hopscotched throughout the 80's when I had numerous hospitalizations, treated with corticosteroids, methylprednisolone specifically. I would repeatedly respond to treatments well, always acquiring a stable condition repeatedly following each exacerbation.
Finally, after numerous, absences from work the doctor ordered me on disability in 1991. MS symptoms continued to plague me. I feel a turning point was reached following an infusion with immune gamma globulin in 1997. I immediately felt better and began to acquire even more stability.
Although there are some ms residual effects they are minimal and I feel so very fortunate to be doing so incredibly well nearly 40 years after diagnosis. Exercise is helping to make my good situation even better!
The very best of luck to everyone.
StarGzr
Just discovered your post -- thanks for sharing your informative, interesting story about your benign MS diagnosis and progression. My neurologist thinks that I, too, have a "benign" form of MS. Like you, I likely had MS for at least 25 years before my diagnosis at age 47. Now at age 52, my cognitive abilities feel significantly impacted, and my right side has developed a weakness that I definitely did not have even 5 years ago. If you wouldn't mind answering a question, I am curious if your MRIs showed an increasing number of lesions over those years or any other changes. Or, like my MRIs, did they seem unchanged even over several years? Also, do your MRIs show several lesions, or are they like mine which show less than 5 lesions of any appreciable size (those same lesions appear in all my MRIs spanning back to 1997. No more, no less). Well wishes to you.
David Kirschner
Hi StarGzr,
I only had one MRI which indicated MS presence (1990).
Metal planted subsequently for another issue, makes the possibility of a second MRI quite impossible.
It's almost too difficult to believe that such a destructive illness has gone into remission for the past 15 years. The neurologist says that it's unlikely the MS will affect me very much more as I grow older. Best wishes
Don Kirksey
I was diagnosed with MS in 1978. Over the next 30+ years I had minimal neurological symptoms. Today I walk with a cane to help with 1) right foot drop, 2) some right leg muscle weakness, and 3) unsteadiness. My initial symptoms included Optic Neuritis, nystagmus, double vision, and Bell’s Palsy. In 2001 I developed bilateral Trigeminal Neuralgia which is being managed by medication and RF rhizotomy.
lilibet
google somatization disorder and then your dreams of spain will be well explained.
Agnes "Dolly" Taylor
I want to thank you, Ian Franks, for posting this article. It has helped me so much as I was diagnosed with Benign MS Sept 25, 2019. However, 26 yrs ago a doctor had an MRI done and immediately with such concern in his eyes that I had MS. He sent me to a specialist at UAMS in Little Rock, AR and that doctor said I didn't have MS. Since then I have undergone seven different MRI's and Spinal Taps. I was finally given my answer. He said it was Benign MS and it blew me away and I know can put in place all the things that have happened to me over the years.
Again THANK YOU
David Richard
It's now been 42 years since the neurologist delivered that life impacting diagnosis. Fast forward to now. I feel really well and continue to exercise near daily to keep it going. The workout is only 15 minutes long and I'm grateful for it. The benefits of regular exercise are endless.. Yes MS continues to affect me in a residual fashion. My balance is debatable, painful spasms catch me off guard and language requires constant monitoring, that said, overall the ms monster has gone into a years long remission. May you all have good fortune