Sunday 17 March 2019
A few weeks back, an accumulation of unexplained symptoms (high sensitivity to light, double vision, difficulty to focus, numbness, loss of control over my hands, nauseas, poor balance, extreme fatigue) led my GP to suspect I have MS. The news took a few hours to sink in. Being French, the initial “MS” did not resonate with me at first. Seeing there was no apparent trigger behind any of my symptoms and no recurrent pattern, my GP first instinct took her to the MS diagnosis. She said to her it was pretty obvious what it was though I needed not to worry for now and await a neurologist opinion. I was confused and having gone through multiple blood tests and a smear to rule out cancer and certain disorders, I had been expecting the worse.
“What does it mean? Am I dying or something?”
“No you are not. People can live fulfilling lives with MS. Research is evolving every day.”
I should have known it is not good when the most comforting thing a doctor has to say to you is “your life is not over yet”.
“Ok. What do you mean research is evolving though – it is not serious, right? I mean, you said I wasn’t dying.”
“Not any more than any of us out here, yes. But the neurologist is the only one who can competently pronounce a diagnosis at this point. No need to go and tell people you have MS yet, OK? No need to worry.”
I did not understand why she was so cautious. She did not explain further what MS was and instead showed me the online NHS page outlining the main MS symptoms. Together we assessed of the ones I had and for how long. I left very much reassured I wasn’t dying and relieved there was, after all, a reasonable diagnostic behind my symptoms. I had considered I might be going crazy. I could live with these symptoms after all; why make such a fuss about it? Did I have the right to complain about them? Was I not just an attention-seeker? The hands paralysis and spams – which is what got me to consult – mostly happened at night (it would wake me up) or at random times; at work, at home, in the tube, etc. I had managed to hide it from everyone I knew and to function normally. Maybe I had dreamt them. Maybe I was overreacting. It was easy to forget about it as there was no left-over pains to begin with (these came later to my greatest joy…). It is only once I got home and saw the grim reaction of my flatmate when I announced “no cancer, though I may have MS”, I understood something was wrong and looked it up.
I am now fully aware of what it is and waiting for my appointment with neuro in… July. Is that sort of delay normal?
Another doctor I had to see while in France for a minor issue with my legs after a hike, also told me it wasn’t good to wait this long for diagnosis and that I should go to the hospital at any sign of symptom so they could give me cortisone. He said failing doing so would likely mean my symptoms would settle and become permanent. Is that real? And if yes, how come the system allows for such time period before on consulting with patients at risk. That’s playing with people’s life…
I read in a post here that “crisis” last only 24 hours and are spaced out of a couple of weeks - is that correct? Mine can sometimes be more recurring than this. Am I more at risk to have the very-not-fun sort of MS?
For so long I just assumed I had nothing and did not even regards most of these things as symptoms at all. They were just how my body functioned and I had no reason to question it.
My family does not do well with sickness. Probably because it scares them. So I couldn’t be ill. Last time I was, they acted as if I did not want to get better. One day I got paralyzed on the wheel, my mother screamed this was a professional car and I better not damage it or I’d pay for it myself. She did not enquire about my emotional or physical state and we never talked about it again. Of course it would be unfair to blame my family for a delayed diagnosis: I am a grown up and my own person and should know better than retrieving to such nihilistic emotional reactions when confronted with something potentially serious. All I know is I did nothing about it mostly because I did not recognized something was wrong. Brought up in a culture of “keep calm and toughen up”, I had learned to live in pain, in discomfort, and assumed that was just life for you, for all of us, and that there were no reasons talking about it.
Currently waiting for my appointment with a neurologist set in July, I live in constant anxiety over the diagnostic to come and have learned of a very new kind of sadness I did not know existed.
I don’t know what’s good or what’s wrong for me anymore. Writing helps. I name things for lack of actual knowledge over what is happening to me, it is easier dealing with that way. Because I can’t say I have MS until having an IRM, I refer to my condition as the “maybe-decease” (yeah I didn’t say I was good at coming up with names tho). At least it is something as supposed to nothing. There’s what I call the “confusion”: a mixture of anxiety and incapacity to focus or visualize thoughts, or simple things, such as the day ahead of me. A subcategory to the state of confusion, for instance, is the “absence”: one, five, ten minutes can go by, a conversation have massively moved on, people jumped into space around me, I don’t know what happened in that lapse of time except I wasn’t truly there (that only happened that drastically once in Africa, where we worked crazy hours in the heat).
“Recklessness” is another one and is hard to cope with: my body stings. I don’t know whether it’s hunger, sleep deprivation, wanting nicotine so badly (trying to quit at the moment), anxiety, another symptom? A nod the size of a fist forms in my chest, under my breast, and it’s like I want to cry but can’t. Not only it is hard to tell what it is, but I can’t stop it. The best to describe that “recklessness”, is a seemingly never-ending state of shock. It is a physical state first inducing an emotional response – and not the way around which tells me it is different from anxiety. It feels as if parcels of my body were continuously quivering and nothing could ease it down. I have no control over it, no understanding of the precise nature of said state; what’s it is made out of, what triggers it; whether it is a symptom or a reaction to my situation as a whole, or something else altogether. It comes and goes when it pleases and I haven’t learned how to foresee the beginnings and ends of it yet. Drinking water helps; writing too (anxiety tends to worsen any sort of symptoms I have, and writing helps stopping my thought spinning out of control). I often crave green vegetables and lack calcium; I am very emotional and my period kicks in every two weeks… I am insomniac… It is more and more difficult to be articulate… Does any of this matter or is of any relevance to my “maybe-decease”?
All I’m told is to not worry. No one can answer these questions yet. I can’t worry and think about it all the time. I can’t freak out. But what else am I supposed to do? It has had a negative effect on my work, too, which requires high level of focus and long hours. Am I just supposed to watch my life go wrong and accept doing nothing about it? Because that’s how the NHS works.
I am at the point where everything has become a symptom and I am going mad.
I have at least admitted to the reality that whatever it is, I have got something. For too many years I have neglected what are today believed to be symptoms of MS. What I retain from this experience is I neglected myself; I did not listen to my body cries for help and care.
Doctors love to say:
“So, you may have MS but you may not, remember we cannot know until you’re properly diagnosed. This could literally be anything.”
(Sure many of us here have heard similar not-so-comforting and certainly not helpful comments from our GPs.)
So I listen. Only few people know about this and they have been great. I dread the day I’ll have to tell my family but have decided to wait for a diagnosis before I do so. I try to be kinder to myself, which is a new concept for me. But I am scared and the uncertainty is getting the best of me. Some other days are OK and some are not.
Someone redirected me to this website and since the only thing I can do is write and hope to get answers and get better at dealing with my symptoms, maybe seeking counsel or just a listening ear from people who have been through a similar experience will ease my pain and sadness. I don’t know anymore. It seems I have lost all certainty I had over life altogether (and I did not have much to begin with).
Thank you for reading.