Last reply 3 years ago
What's usual?

I was dx in April 2009. Last saw consultant May 2011. Got a M.S nurse in 2013. Doctor referred me for appt with consultant last Nov (16 weeks ago) Just phoned Hurstwood Park they said I may get a letter in the next 5 weeks.
Is this how it is usually?

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stumbler
3 years ago

@min , I saw my Consultant Neurologist in January for my annual chat. It was decided I should see the Consultant as I hadn’t seen her for a couple of years.

Well, I started posing my usual questions about treatments that are and aren’t available. She eventually suggested that I may want to see the MS Specialist. I thought WTF!

Anyway, I got an appointment with an MS Specialist at Hurstwood Park for the end of July. That was until earlier this week when I got a phone call from Hurstwood Park asking if I could do a Saturday Appointment.

I’m now due in there this Saturday (28th)!

So, what’s usual? Well, with MS, nothing is usual. And it seems nothing is usual with the NHS either. 😉


min
3 years ago

Thank you Stumbler (& hi, I know we have chatted a few years ago)
That’s great that you have got an appt on Sat!
The problem I worry about is that when I eventually get to see the wizard at emerald city I won’t know what to say. It’s like, you don’t know what you don’t know, so maybe I’ll just say ” ok, it’s been 4 years – assess my current situation. Have I had a relapse? Have I got more lesions? Can you make my foot drop better? Should I be having physio? Is it M.S or menopause that’s giving me problems?
At this point I will probably be forcibly removed…
And I shall say, I can’t do Sat if there’s a home match at the Amex 🙁


stumbler
3 years ago

@min , you do need to get it clear in your mind exactly what you want to achieve from the meeting.

Scribble some note together, then let them lead the discussion/consultation, until he gives you an opening to fire your concerns/requests/questions.

As long as you’re polite, you won’t have any problems. Being a frequent attendee at the Amex, you must be used to awkward situations… 😉


makkymee
3 years ago

Hi @min

I’m in a routine where I tend to see my MS Neurologist every 6 months & at every appointment I pull out a list of questions. No matter the question I always ask. In the beginning there was lots of waiting & chasing but now it’s settled down.

Good luck with your appointment, hope all goes well

Makky


min
3 years ago

Thanks Makky I’ll see what happens 🙂


min
3 years ago

Thanks Stumbler, will take your advice.
Appreciate the cheeky footie banter! Your right it’s getting to be a bit awkward, maybe we should have stayed at Withdean!


graham100
3 years ago

@stumbler. Didn’t even realise there was an MS specialist. I just presumed my consultant nurologist was that person? But I suppose thinking about it they deal with Parkinson’s and all sorts. So that makes them jack of all,, master of nun?? lol


us-emma
3 years ago

@min,

Ask 1 question- “Am I a candidate for Lemtrada?”

It’s a trick question- you are. But if an American can be a little cheeky (I know we can’t, our timing is all off and we don’t contract words well…) it is the most important question.

One treatment in 2015, another in 2016 and maybe you will just be done with this awful disease an on to more fun things in life!

(I was going to say football, because I was thinking that is what happens at Amex, but I’m a clueless Texan and we cheer for an entirely different sport of the same name)

@stumbler I hope your meeting goes well. Would enjoy knowing what you learn. Glad to hear y’all (yes we use that word here, honestly, we do) have access to MS-ologists! Just what we all deserve.

Em


grahamjk
3 years ago

Hi all, listening to you all it occurs to me I am very lucky. I was diagnosed in April 2014 and although I’ve had two relapses since I’ve seen my consultant at least 3 times and I’ve seen a MS specialist nurse regularly, that might be as I’m on the edge of three counties I fall under the coverage of both Derbyshire and Staffordshire MS Nurses. As I’m now on TYSABRI I’ll see my gorgeous nurse at Derby hospital every 4 weeks. Personally I think everybody should get to access to the specialists they require. All I can say is Derbyshire NHS have been fantastic


chloeautumnx
3 years ago

I can agree with you @grahamjk.
I feel very lucky. I was diagnosed January 2015, have had two relapses, seen my consultant 3 times and my MS nurse once but spoken on the phone 3 times. Been referred to Salford Royal for DMD’s (awaiting appointment), physio (waiting) and a urology appointment is in May. Although I am still waiting for appointments, I have been very happy with the level of care I have received.


tiggermum
3 years ago

I always go in with a list of questions. I ask one, and the Con sits there reading my notes. The nurse often smiles at me, but the Con is very closed up. His reply to my question was vague and in the end made me go off and do research myself!

My appointment in January was cancelled (by me, sadly – I couldnt make it). But, my next one is now July – they have nothing sooner. My nurse is on holiday, but will “call you when I get back from annual leave”. So I am in limbo for now.

However, my question when I get there, will be as you suggest “Am I eligible for Lemtrada”. Who knows, may the Con will actually answer the question. Good luck everyone.

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