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Still in denial

Appt with MS nurse yesterday - I said I still wasn’t convinced the dx of MS was correct. She told me that was a common reaction, but that the Neuro would not have diagnosed MS lightly. That he felt there was enough evidence from the Lumbar Puncture, Evoked potentials test, MRI scans and history of symptoms to be sure enough to diagnose RRMS. I went on to describe random symptoms I’ve had since last appt with her in January; she said she didn’t feel it was indicative of a new relapse, but more likely exacerbation of old symptoms brought about by recent ongoing stress. Whilst it was good news that she didn’t think a new relapse was likely, it felt a bit dismissive; calling it a ‘pseudo relapse’ made me feel as though it wasn’t genuine…and they wonder why I don’t really believe them! Has anyone else experienced kind of response?

If your diagnosis was only in January, then you very likely are still in denial. Just over 3 years for me and I’ve only recently started to accept I really do have ms and it’s for real. It is a common thing and people seem to go through all the stages of grief, before accepting the reality that it’s here to stay and it really is happening to you.

I’m afraid you’ll have to accept this and understand your neurologist has years of experience behind him, apart from the obvious years of training. He didn’t come by her qualifications lightly either. It’s very hard at the beginning. Everything is changing, every odd happening in your behaviour, physical or otherwise, is to be questioned, analysed, dissected. From my own experience, form a good positive relationship with your neurologist. You’ll be working together for a long time. Best wishes.

Hi,

I agree with Poppy. The neurologist has to follow a system of diagnosis called the McDonald Criteria in order to make the diagnosis. Everyone who has been diagnosed with MS has been through the same rigorous family of tests.

Your MS Nurse knows much more about MS then I’ll ever know. She has seen the entire range of symptoms, some of which you’ll never have. Don’t be put off by technical terms like “pseudo relapse”, it can be misleading as there’s nothing fake about it.

Your MS Nurse is your new best friend. She wants to help you, not fob you off with nonsense. Trust her.

Best wishes,

Anthony

These words like ‘pseudo-relapse’, or ‘flare’, bug the hell out of me.

How on earth is someone supposed to get their heads round their bloody diagnosis if you are using terms that are so iffy and meaningless. Either it’s a relapse or it’s not. If it’s not, then it’s probably symptomatic of damage to the myelin caused by previous relapse(s). Which could possibly be caused by stress, but equally, might just happen. All by themselves.

Yes, trust your MS nurse, but ignore any language that makes you doubt your diagnosis or feel crap. I kind of disagree that your MS nurse is automatically an expert. They are human beings, some of them are great, some are rubbish. If yours is making you feel shitty, then trust your neurologist instead.

Sometimes MS nurses come over as being a bit ‘fluffy’. They use terms that are useless for you to do anything with. And the word ‘pseudo’ does make you feel like they think you’re making things up.

You’re not.

Sue (Sorry, I came over all ranty there for a minute. I think it’s lunchtime. Cheese is needed.)

Thank you all for your replies. Actually I appreciate the rant Sue. Iffy and meaningless are good descriptions of the terms. I would also add irritating, patronising and offensive. I know there is a danger of attributing every random symptom to MS when in fact they might be totally unrelated; the difficulty is knowing what if any, to report. After having my own experiences minimised, I’m not sure that placing further trust in the medical professionals is something I will be doing again.

I know I may be doing a good impression of an ostrich and burying my head in the sand…

…but I’ve written letter to Neurologist asking him if he will definitely confirm dx of RRMS (sent end of November, still waiting for response).

In the appointments I had with first Neuro, “MS” was never mentioned. he was always very vague; I felt as though my symptoms were trivial, that I was wasting his time.

The way subsequent letters have been worded were also vague and non-committal, only 1 letter actually mentions MS, the others all refer to ‘inflammation or inflammatory problems’, the last letter from second Neuro says two ‘probable attacks’ in the last 2 years… which doesn’t exactly fill me with confidence!

Given the persistent badgering about informing the DVLA of dx and the impact on earning ability if my driving licence were to be rescinded, I want to be absolutely sure there is no doubt, if there is the slightest chance my symptoms might not be due to MS, I wasn’t to explore that before it being made official, as it were.

Am expecting to be told how stupid this is… that I should accept dx already given (as a well meaning friend told me)…

but can anyone relate…?

I can TOTALLY relate!! I too, was dx in Jan based on one relapse, positive MRI, VEP, and LP. It still just doesn’t seem real as I’ve had no other big symptoms since my initial relapse (ON). I think I’ve gotten my head around it as much as I can but I don’t think it will hit home u TIL I have another relapse - that will be such a punch in the gut I’m sure. I get the odd twinges and funny feeling in my hands but they don’t last more than a few hours so I don’t know what is MS related which is frustrating. Over time, though, Im beginning to dismiss these ‘twinges’. But until I fully know what I’m looking for I still do panic quite a bit when something new crops up… I’m quite lucky that one of my best friends has MS (well not lucky for her!) so I can ask for advice from her. I fia lily saw my Ms nurse last week and she said it’s common to have small twinges as there could be tiny lesions in CNS that aren’t picked up on MRI. I’ve pushed to start Tecfidera ASAP as I want to minimise everything as much as possible - are you going on any DMDs? Why do you think your driving license will be rescinded at this stage? From what I’ve read from other posts there is no definitive test for MS so I don’t think you’ll get away from the ‘probably’ and ‘most likely’ references from your docs. :frowning: