So....still in limbo, but have MS nurse and Injectables.

New diagnosis and before diagnosis
1

So, just saw the Dr today. I was seen by a very lovely specialist registrar.

I was told that:

  1. I still don’t meet the McDonald Criteria, despite lesions on my brain and spine.

  2. I’ll probably develop MS, but it will probably be “benign”. Despite the pain and numbness still present from my initial attack last year. Yay!

  3. I’ve been offered a lumber puncture, but have been told that positive result won’t necessarily make me fit the criteria, despite all the literature I’ve read. Yay to undergoing an invasive test for no reason!

  4. The new lesion I’ve developed in the last year is in the wrong place to be considered a “MS one”, and it could possibly be artefact. Despite the fact that I have had symptoms that originate from that area of the brain. But of course, I’m not a neurologist!

  5. I’ve now been offered DMD’s. But it’s only the injectables, as I still only have a CIS diagnosis. I’ve been told to really consider it, but “advised” not to take it as they have low efficacy and may hinder other the DMD’s I may need to take in future.

  6. I can have access to an MS nurse to allay my concerns. Concerns of what? Not having a diagnosis and access to effective DMDs

  7. I should be happy!!!

Well, I’m not. I’m fed up, fatigued, in pain and numb in some places and over the whole thing. I want to rewind the clock to last year, when I didn’t have any neurology appointments and I MS was never on my radar. Then I’d be happy.

If I seem ungrateful, I sincerely apologise to those in a worse situation. But, I’m fed up of my family and friends and especially my husband of making me feel like I have an imaginary disease and I can positively think myself better. I’ve been told that it can take upto a year to recover from a relapse…well I’m still waiting.

By the way…I’m completely hammered. I decided to celebrate not having MS, with a bottle of wine, yes a bottle. It was all I had in the house. After all, I’m fine and was told to be happy.

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don’t apologise for letting some of your frustration out on here.

i totally understand where you are coming from.

as for being hammered - only one bottle of wine??

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What a nonplussing consultation. ‘You sort of have MS, more or less, but you don’t quite really, and we think that smudge might be an artifact of the scanning process and never mind your matching symptoms, and we can only give you something if you insist, but it doesn’t work very well and anyway it might mess things up if you ever did manage to turn the magic key that let you progress to the next level of the game…’ Jeez. I would have got through a bottle after that as well. In fact, I think I probably did, after a consultation when I was roundabout where you are, nearly 20 years ago.

It’s really unsatisfactory-feeling, I know, and part of you would love to have got a firm dx to allay some of the uncertainty and shut up the naysayers. But the moment of triumph would have been short-lived and hardly worth it. Not quite having MS and putting up with the Doubting Thomases would get my vote every time - having MS opens up a whole new world of uncertainty, believe me. Do you remember the (possibly apocryphal) story of Spike Milligan’s gravestone? Carved into it is ‘I told you I was ill!’ It’s funny because we all know what he meant and because we all know that the joys of being proved right can be short-lived.

Hang on in there. I’m sorry you are still in limbo, but I’m glad you’re still in limbo, if you know what I mean.

A

x

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I could not agree more with all that Alison has said. Yes, it’s a sod having that kind of consultation, but as she said, thus far you don’t have MS. Which, in spite of the problems, is better than having it.

I’d have wanted at least one bottle of wine too.

Sue

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