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New neuro, new plan :D

Hi all,

Today I have seen a new neuro (an MS specialist). What an amazing experience compared to my old neuro (who I didn’t have much faith in), I have a proper diagnosis (RRMS) new drug options to aggressively treat the disease (Tysabri as my MS has been quite active this last year). MRI’s and up to date bloods ordered.

My old neuro had no plan at all, I was just drifting, getting worse, being offered . I have been filled with so much confidence, I was inappropriately grinning throughout the appointment as I was finally getting somewhere.

The new neuro has recommended function electro stimulation and the walking clinic in London, not sure if she is refering me at this point as that was part of the appointment I missed :/.

In my new found confidence I have joined the gym. Life is not over and the MS is finally supported!

(My old neuro told me I had MS, didn’t know what type and sent me on my way with no support at all).I am so pleased.

Nikki

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[quote=Zombiesquirrel]

My old neuro had no plan at all, I was just drifting, getting worse, being offered .

[quote]

I was offered nothing until December 2015 when he sent me a random email offering first line drugs. It was all odd.

What a wonderful post. Makes a change to hear such positive thoughts on a great neuro! Which hospital is he at?

Hope the FES helps!

Pollx

Hi Boudica,

Princess Royal in Sussex. She was completely straight down the line, asked loads of questions and for a complete history from 2008. She listened to me and came up with a solid plan which is what I didn’t get from my old neuro and is what I need to move forward.

So my advice to others is if you are not 100% confident in your neuro, change them, its your right to have a care provider who works well for you.

Brilliant experience (saw my lovely MS nurse too, always a bonus). I feel I have the right team for my MS care now :).

All the best

Nikki

BRILL!

Pollx

Quite simply… CONGRATULATIONS!

MS is something, against which a strongly positive mental attitude is vital.

I was lucky; at my first meeting with my neurologist, he explained quite emphatically, that those who live well with MS, live well!

Never quitting; always doing as much as you are able to; not being afraid to expect more from yourself; treating yourself to adequate rest and a genuinely good, healthy diet; all these things have their foundations placed upon a sense of having a long term strategy and plan. and that is something which can be dependent on the neuro you consult.

good luck with getting on with what remains… that being, everything!

I’m so happy I’m doing the ‘futterwhacken’ (Alice in wonderland reference)

New diet starts on pay day :slight_smile:

Nikki

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Hi Nikki,I have not long started Tysabri. 2nd infusion yesterday and been all good so far…hope all goes well for you also…Terry

Thanks Terry,

Just having an MRI to make sure I have more lesions in either my brain or spine (whoopee) then its full steam ahead with the Tysabri. I was suprised as she wants to bypass the firstline drugs and bang, go straight for the big boys. Suits me as Tysabri reduces the amount of accumulated disability by 80% compared to someone not taking the drug.

PML scares me a little, its quite high statistics.

Have you had any side affects at all?

My friend has chron’s and they use the same drug to treat that so I’m waiting for some feedback from her too.

Nikki

Wonderful news. So, so important to have a good neuro. Not all are equal.

None at all,felt a wee lift after both infusions if anything. As for PML forget about it. Glad your moving along…Terry

Nikki this is brilliant. It is so positive when your neuro listens and you have confidence in them. Fingers crossed that FES is good for you. It doubles my range by halving the effort and reduces trippage, thus saving valuable NHS A&E resources.

It is so nice to ear good news. I went from a waste of space neuro to one I trust and respect, it made a huge difference to my outlook.

All the best mick

Thats great to hear about FES being effective for you, hopefully it will be as effective for me - my dog will be so pleased :slight_smile:

Looking onwards and upwards

Nikki