Last reply 4 months ago
Just wondering again 😀

Here in the UK you tend to be diagnosed through a collaboration of testing and a few nuerologists.
So once you have a diagnosis….
Why doesn’t your local hospital nuero who tends to be a jack of all trades, not make it known that there are other nuerologists who specialises in MS and they’ll be more beneficial to your needs or you stick with me and I’ll give it ago….
I mean you wouldn’t call a plumber to fix an electrical fault….. would you?
Or have I just been unlucky with mine.
But after a few enquiries I’m in the process of jumping ship to an MS specialist 12miles up the road.
Why didn’t my old nuero, just even suggest that option?
Just wondering?

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7 months ago

@highlander, you’re not the only unlucky one.

I used to pop in annually to see the Neuro Nurses. I though that was all the support we had. II thought they were My MS Nurses! It was a case of turning up, “how have you been?”, “Getting worse!”, “Oh, we’ll see you next year”.

Then, when we were arranging the next annual appointment, it was decided that I should see the Consultant, as I hadn’t seen them for three years.

Well, the following year, I turned up to see the Consultant, with my usual list of questions. But, it soon became clear that I knew more about MS than they did! Then, they said, “Perhaps you should see our MS Specialist”!

My initial thought was why am I wasting my time with you!

So, yes, we do have to be our own advocate and not settle for the jack-of-all-trades. 😉

7 months ago

@highlander, you are no different to the many who have joined the MS conveyor belt @stumbler hit the nail or nails on the head, I tend not to worry these days, i’m in it for the long term anyway ( god willing ).

4 months ago

It’s seriously scary to realise that the course of one’s MS may depend on your luck in finding the right healthcare professional at the right time. My luck has been: 1) a GP who was so appalled at my initial experience at the hands of the local neuro that she referred me to London b) coming across a miracle-worker neurophysio who corrected my gait and gave me the life lessons in how to manage MS c) another physio who found me the orthotic that gave me back near-normal walking capacity (in contrast to what was on offer at orthotics depts). Luck can also determine non-medical issues: a recommendation for a sports club membership gave me the tools to manage fitness, a friend’s advice to start low-carb, blood sugar reduction eating restored my digestion. All of this on the back of casual conversations and chance encounters. It makes you wonder…..Thank goodness for, where we can hopefully enable more of these exchanges.

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