Surprised to find myself upset.

Hi all

I am awaiting diagnosis and am due to see the neurologist on 19th June.

I was told by an A&E doctor recently, after he conferred with a neuro consultant, that I am probably facing a diagnosis of MS.

I have described my symptom history at length in previous posts.

Today while at work, a colleague asked me how I was doing at the moment, and then proceeded to tell me she didn’t wonder if it wasn’t all stress related.

Stupidly this has upset me. I have felt for a while now that at least a couple of my colleagues think that I am imagining my symptoms. I think maybe on some level I am afraid that it might be true.

I also realise after years of having no explanation for my symptoms that I am just as afraid of being told it is NOT MS as being told that it is. Not knowing what is wrong with me has now become even more of a dread than facing up to having MS.

Does any of this make sense?

Kaz x

Hi Kaz,

Yes, it makes perfect sense!

I’ve been diagnosed over 2.5 years, but was still upset recently, when an ignorant person asked: “But do you not think it might all be psychological?”

Yeah, like I caused lesions in my brain, by having a “bad attitude”?

I can still get upset by such comments, and that’s when I’ve seen the pictures, and know damn well there’s something wrong - though I’d accepted for years being given a “depression and anxiety” label.

Prior to diagnosis, I beat myself up for a long time, over why I couldn’t just snap out of it, believing it WAS some kind of personality flaw…

I can also relate to being anxious about the possibility of being told it’s NOT MS, and that you might never get answers…

When I attended my diagnosis appointment, I was about 99% certain that’s exactly what it would be, as everything had been leading that way. But there was just a small doubt - about 1% - that my consultant would say: “Sorry, we’ve really no idea. Just go home and live your life, and tell us if anything else happens.”

He must have read my thoughts (or guessed them, from looking at my earlier diagnosis of “depression”), because he said: “Tina, it’s not in your mind, we’ve found it!”

I don’t mean of course, that depression isn’t a very real and serious illness in its own right, but you don’t get photographic evidence, do you?

People were saying to me it would be good if I wasn’t diagnosed, because then there would still be a chance it wasn’t MS, but I realised I didn’t want to spend more time without answers. What would it mean for me, if I was sent home still not knowing?

So I do fully understand. Somehow naming it means you at least know your enemy, and can begin coming to terms with it. I’m not suggesting that by knowing, you can ever beat it. But somehow an invisible, nameless enemy is harder. Until very close to diagnosis, I’d never really considered MS, but did think I was ill. When it was named for me, pieces of a jigsaw fell into place. I thought: “Of course! That explains everything!”.

Prior to that, I’d been told all sorts of stupid explanations (apart from the anxiety and depression): for example that it was caused by my footwear (I’d NEVER worn extreme shoes), or that I had one leg longer than the other, or even that it was just: “Being over 40”.

MS was the first thing anyone had said to me that I intuitively felt: “Yes, that’s it!” I’d never been convinced by the other explanations.

I don’t know what to advise you if it does turn out there’s still not enough evidence for a diagnosis. I think you just have to tell yourself that IF it’s anything sinister, the truth will out eventually. It doesn’t just go on being medically indetectable forever - mine didn’t!

Your colleague may be at least partly right, in the sense that stress, whilst it does not cause MS, is well-known for aggravating the symptoms. So it’s entirely possible for you to have something that isn’t psychological, but still made worse by stress. If life is very stressful (apart from the obvious stress of an unknown illness), you may have to think of active strategies for reducing or avoiding stress.