With multiple sclerosis, hindsight is accurate — and often unkind

Similar here. Had MS ‘hug’ as a child. Didn’t say a thing, figuring my mom wouldn’t believe me. Then later going to UNM health insurance was cheap and not much was covered. Later working with good insurance had an MRI and better health insurance it was diagnosed as likely MS. Worked uten years after, until I could qualify for early medical retirement. Retired, low income, but I couldn’t have gone much longer working full time. After retiring and finally able to get enough sleep, my MS symptoms eased some.

Still it’s a really cruddy way to be forced to retire early, low income and all.

Absolutely! Thinking back, thought I was just a klutzy kid, falling down a lot, now realizing must’ve had it for a good part of my life, simmering on the back burner. Not that anyone here in the Midwest in the 1960’s would’ve known what to do about it.

Got dx´d in 2010 and had Babinski sign. If you are having a shoulda, woulda, coulda kind of day maybe this will help: I got put on Copaxone and it did nothing other than give me huge itchy welts and 2x the can´t breathe reaction. Then on to Fingolimod which also didn´t help. Finally started Ocrevus in 2017 which helped immensely. So, though you were late to the DMT party, I hope you have gotten efficacious Rx since joining. If you want to hit it hard and go for remyelination, consider a clinical trial sooner than later as a lot of them have a cut off of age 55.

When are they going to start researching stem cell therapy in the US using cord blood? Easily available and not requiring chemo therapy first? It is being used in some foreign countries and seeing some positive results. But there is no big money for drug companies !! There are so many conditions that stem cells could help, why does it have to be so hard in the US?

I was aware of 'changes' many years before my diagnosis in 2012...but I suffered a major motorcycle accident in 1991 and supposed that all the vague but challenging symptoms I was having were just a legacy of the significant injuries and brain damage incurred after that event. Other health challenges from childhood also clouded my belief that there was something more significant going on. Unfortunately, I did not receive decent healthcare from any of the doctors I was seeing over the years who chalked my concerns up to being a 'malingerer' and lazy despite debilitating and inexplicable exhaustion, malaise, vision problems, hospitalisation, etc. And, I believed them and became profoundly medico adverse. It took the loss of vision in my left eye to finally receive the detailed and thorough investigation I needed to finally receive the diagnosis of MS.

Benjamin, thank you for your column. I have recently "discovered" this website. I live in Poland (central Europe), currently waiting for my spinal tap results but so far it looks it is primary progressive MS, especially that my brother and uncle had it. I am pretty depressed at the moment especially that the doctor said that if the diagnosis was confirmed, I would not qualify for Ocrevus or any other treatment apart from symptomatic treatment, such as pain (which I unfortunately feel), antidepressants, physical therapy, etc. For the past 4 years all my symptoms were treated as caused by emotions, depression as my emotional "construction" has always been weak. I think that what I need know is some tips as to how to carry on? How to motivate oneself to get out of bed in the morning? I suppose each of us has to find the answer on our own. Benjamin, please continue your writing, as there are not that many people with primary progressive MS, and it definitely helps others like me, for example:)

I managed to get my diagnosis at 65, obviously missing a few signs along the way. I ignored a positive Lhermitte's sign for decades, thinking I was just " special". There was that electrical shock down my leg and a odd dizzy feeling when I would look up suddenly. I thought it was probably MS, but managed to have at least 65 good years. Now I am 72 and realize that old age is not a good time for serious health complications.