Last reply 1 week ago
Am concerned about disclosing improvemen

Advice?

I hate saying 5o my neuro that something may feel better than last time because I fear 5hat they will see this as some sort of evidence that my MS is slowing down or abating.

There are several reasons for my concern:

I don’t seem to be as affected as others in clinic and, until recently, I was quite fit. I am trying to keep light (for me) exercise up as I feel that, subjectively it improves my day to day well-being. Spacticity/fatigue etc.

I fret that they somehow feel that somehow my MS is lesser and therefore not such a treatment priority as others (in my mind we are all equally affected despite external differences).

When choosing treatment they always seem to want to go easy. Frankly, I’d have stem cells, HSTC, if they’d let me. They won’t and I trust them 🙁

I try to get across that they ought to spend a fortnight in my body and see me at my worst. Not midday in clinic when I’m not yawning, can string a sentence together, and don’t crash about the house being clumsy.

Has anyone worked out a way of communicating the seriousness, the feeling that it I quite literally knawing away at you, bit by bit, without sounding like the boy who cried wolf?

This is my main frustration in the treatment environment. I wish all the medics would nivert the pyramid, as Prof Giovanni says.

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dominics
2 weeks ago

Whose thumb can’t hit the “t” properly? Apologies for the random ‘5s’


bernadette
2 weeks ago

I feel exactly the same dominics, I would think many of us share your feelings. Being ‘not as affected as others in the clinic’ is making assumptions though. Most of us want to put on our best face in clinic.
In the end it doesn’t matter what clinical staff do or not think. What outcome do YOU want from your neurologist? I try to focus on that alone. If you want the most efficacious drug make that clear, even if you need to repeat it. Explain you don’t want him/her to ‘go easy’ Be a pest if you have to.
good luck


cameron
2 weeks ago

I agree with @bernadette. Maybe you should be asking directly why you can’t be on a stronger drug. Then you can judge for yourself if the explanation is satisfactory – the Barts MS site is good for information on the whys and wherefores of prescribing DMTs. If it seems that it’s an over-cautious neuro, consider changing teams, which is of course your right under the NHS Charter.


dominics
2 weeks ago

Thank you both. They are in no doubt of what I’d like. 25y in and I often hear variations of, ‘you’ve done well’. A bit frustrating!


siobhanw
1 week ago

A way to communicate what it is like living with MS? I draw and write poetry. This bypasses the cerebral, distancing effect of trying to explain simething that other people don’t experience and know nothing about. My drawings can be more eloquent than my words – I learnt from doing these how it feels to be a heavy, tired thing. (I wondered why I was drawing zombie- like creatures!)


grandma
1 week ago

I’ve been through the sane thing with my Cancer, I never looked ‘ill, even when going through chemo, lots of people commented on how well I looked😫 They should have been inside my body! I no longer have such a proble with my ms as I live alone and when I do go out it’s in an electric wheelchair which is a but if a giveaway😍

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