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 why 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?
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.
2002 – Not affected significantly.
2017 – Unable to stand longer than two to three minutes.
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.
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.
2002 – Very occasional.
2017 – Much better than 10 years ago, my worst time. Falls are better managed now.
2002 – Urgency and frequency problems, treated by medication. Wore incontinence pads.
2017 – Same medication, occasional use of pads.
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.
This article, written by me, was first published by Multiple Sclerosis News Today.
50shadesofsun.com is the personal website of Ian Franks, who is Managing Editor (columns division) of BioNews Services. BioNews is owner of 50 disease/disorder-specific news and information websites – including MS News Today. Ian has enjoyed a successful career as a journalist, from reporter to editor, in the print media. During that career he gained a Journalist of the Year award in his native UK. He was diagnosed with MS in 2002 but continued working until mobility problems forced him to retire early in late 2006. He now lives in the south of Spain. Besides MS, Ian is also able to write about both epilepsy and cardiovascular matters from a patient’s perspective and is a keen advocate on mobility and accessibility issues.
6 thoughts on “Benign MS: Is It Real or a Myth?”
Yes, I agree. There’s no such thing as benign. I wasn’t diagnosed until about 30 years of trial and error. And I would say the most critical stages of disabilities have happened in the last five or six years. You know, doctors are just practicing medicine ?
This is so sad and true about how many neurologists label MS.
No MS of any kind can be called “benign”.
MS is about accumulating damage – just because it is a slower moving wrecking ball does not mean that it is “benign”.
It is extremely unfair because if you have fast moving MS, you usually can get treatment to get it into remission before you get too badly permanently damaged – HSCT, etc.
I have known people who got MS the same time as me that have had HSCT because their MS was moving faster.
They have been able to return to work.
In the meantime, because my MS was slower moving, I was not considered an emergency.
I am currently now struggling at times to keep walking. I am now going to have to go out of country on my own dime to put my MS into remission. I have had to go on disability because of the relentless fatigue. The “benign disease has cost me my working life”.
The family made the decision for me to go because it will cost the family more to have the house fitted for wheelchair access.
…And as my MS has relentlessly marched on… it isn’t hard to see that if I don’t arrest it I will likely need to live in an assisted care facility at my end of life.
So, it is cheaper to pay for the chance of remission now because if I don’t I will cost the family more.
How fair is that?
Ian, I am probably where you were when you were first diagnosed, and I am now 41. I often felt that there was nothing “relapsing” about RRMS because I have had many of the same symptoms 24/7/365 for four years!
I recently saw a different neurologist who looked at my MRI from the end of this February. He noted that I have no active lesions, but could clearly see my lesion load was detrimental. In his opinion, I was “Chronic Progressive,” which I understood to mean Secondary Progressive MS.
Thank you for sharing your MS journey on the other side of the world. Enjoy your Mediterranean lifestyle and enjoy life with chronic illness as much as you can!
I heard the terms benign and malignant MS in just the last few months. I figured it was a result of the trend in using chemo to treat MS. (Even though I have had MS over 33 years and SPMS for the last 13 years, I had never heard these terms applied to MS.) Probably no longer seeing neurologists may have something to do with this. I also do not take the immune suppressant drugs.
What medication are you taking and how,s the side effects? Keep strong and look to the Son 😉
I have never been offered any MS medications, just treatment for symptoms such bladder and bowel problems and pain. Back when I lived in the UK, one specialist MS nurse refused my request to see a neurologist, saying that I’d had RRMS, by then had SPMS and that there was no point seeing a neurologist as there was nothing he could do.