Last reply 3 years ago
The very start of your MS journey …

Hello all,

What a wonderful, supportive and informative community this is! I know a couple of people who have MS, but my foray here is really to undertake research for my next novel.

My protagonist suffers from Primary Progressive MS, and I would like to understand what she would have been feeling before she was diagnosed. And as such, I’d love to know more about your individual experiences at the start of your MS. In particular:

1. Did you suffer a lot from fatigue, or did you always need a lot of sleep?
2. Did you have a period of depression that you didn’t understand prior to diagnosis? I’m trying to understand the causality here. Does depression cause MS or is it the other way round?
3. Did you suffer from emotional volatility prior to an early episode?
4. Do you feel MS has altered your intrinsic personality?

I’m trying to understand where the person ends and where the disease begins, and to do my character justice. Your help will be very gratefully received!

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3 years ago

hi rababes,
I started out with rrms and am currently spms, but I am quite happy to try and answer your questions from my diagnosis and point of view.
q1, never suffered with fatigue until well after dx, always led a very active life and even managed to hang on to that for the most part until dx spms. when I think back I encouraged myself to do more not knowing when and what was looming in the future. I have now accepted fatigue as one of my friends, forever telling me to slow down and pace myself and not to plan too far ahead. also because I suffer with neuro pain fatigue only stops me it doesn’t make or even help me to sleep.
q2, never known depression before ms. not even if sure if I understand it now. I have good days and bad days. I have mood swings of which I like to think I am generally aware. if I think hard enough I am sure I had these throughout my life, so I come to the conclusion that I never suffered from depression or i’m depressed since the day I was born. I find this a very interesting subject of which I do not believe I have ever been analysed. hence, maybe i’m in denial.
q3, yes emotional volatility has been present throughout my life. but I feel never more so than at the acceptance of dx. I don’t think I was in denial of the disease, just did not want to label and accept it without an argument, more often than not with myself hence mood swings. overall I believe it has made me emotionally stronger, in such a way I accept what life throws at me, think about it and deal with it rationally as opposed
to for want of a better word accordingly.
q4, a very good question. I have not hallucinated since I was a teen. I don’t have good dreams or nightmares that I remember, ever. no imaginary friends that I don’t get along with. although my thoughts on the meaning of life may have swayed slightly, changing perspective over the years. I definitely have a more tangible view on quality of life, which could also have developed through aging. so in a broadest sense I would have to say yes and no.
in your dilemma of finding where the person ends and the disease begins, my view would be that the person never ends, they adapt. some in more ways than others. a strange mechanical view would be a new car with teething problems that may extend to loss of wheel balance going into a faulty transmission, maybe the a puncture or the loss of wheels. coupled with sluggish acceleration, maybe the dimming of lights, hardly used but yet the feeling of worn out upholstery….and so on. I think its unfathomable to really understand all aspects of the disease even after spending a lifetime studying or living with it as so many will experience what others do not. my belief is the spectrum of the disease is so wide as it is broad its just going to take a little longer to understand but then ultimately we all hope… I hope.
please bear in mind this is only my point of view, I am sure you will get many others and look forward to browsing them.

3 years ago

Hi Mikee,

Thank you so much for your very candid reply. I really like your point about your personality adapting and not changing as such.

Its fantastic to hear of your positive attitude, and here’s hoping that a credible and lasting remedy is soon brought to market.


3 years ago


Hi, before I was diagnosed with RRMS I was suffering spells of fatigue and very emotional and depressed at times which was unusual for me cause I’m a very positive cheery person, my dr believed I was suffering with body dysmorphia. I went to counselling but stopped it because I felt it wasn’t right, then I had a sudden relapse was diagnosed and now I’m back to my positive self. I believe it was the build up of the severe relapse that brought these emotions on. I had a massive inflammation over my right side of the brain. Now it’s cleared with steroids and plasma exchange I’m back to myself pretty much. If you have any questions let me know x

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