Last reply 6 years ago
Newly Diagnosed and loads of questions

Hi
I met my MS nurse for the first time yesterday and now have more questions than ever. I didn’t find her very helpful and was wondering whether it is possible to tranfer to someone new?
She has also mentioned disease modifying drugs and wanted to hear more about other people’s experiences

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GMG
6 years ago

You can transfer to another MS Nurse if you have more than one in your area or if you switch consultants to someone outside your area. Additionally, if you go to a MS Therapy Centre, they often have drop in sessions with MS Nurses which anyone can book. So you could see if there is one which has a different MS Nurse to yours. This forum is brilliant for people’s experiences so ask as many questions as you want – there’s bound to be someone who can give you an answer! (And welcome to the forum! 🙂 )


Gav
6 years ago

On the subject of switching nurses, its possible but I would reccomend giving her a second chance, there is a lot to cover in the initial stages of this little world of MS we inhabit and you can only hope to briefly touch the surface in your first meeting.

As far as treatments for MS goes, there are four main types, all with a similar effectiveness and each with their own side effects. I’ve be


Gav
6 years ago

been on thre


Gav
6 years ago

sorry, keeps submitrting for some reason. I’ve had 3 treatments since diagnosis 4 years ago, my first wasn’t licensed and had some fairly major side effects, damned effective though. Since then I’ve had Copaxone and currently I’m on Tysabri, feel free to message me if you want any more information.

We’ve done a really informative video on treatments for MS with the sites resident neuro, Dr. Simon Shields, you can catch it here http://www.youtube.com/watch?v=Z3gOAWK-rgM&feature=plcp&context=C33776a2UDOEgsToPDskIqvu3PEjyxFZwC4gwTiDbw

I hope that helps 🙂


Amanda0912
6 years ago

Thank you. This is useful. I have emailed her now I have had a little time to reflect so am hoping to get a few more answers through direct questions 😉

My symptoms at the moment are mainly sensory so I am trying to decide whether to take medication (I have luckily been offered it)or wait to see if my relapses become more severe.

Gav, I am not sure how to message you directly!


Amanda0912
6 years ago

Thank you. This is useful. I have emailed her now I have had a little time to reflect so am hoping to get a few more answers through direct questions 😉

My symptoms at the moment are mainly sensory so I am trying to decide whether to take medication (I have luckily been offered it)or wait to see if my relapses become more severe.

Gav, I am not sure how to message you directly!


Cariad
6 years ago

Hey Amanda, like has already been said, shift is fab for asking all your questions-even if you think something sounds ‘silly’…there’s always someone who can help and you won’t feel alone with everyone here supporting you. I had my first relapse in Oct 2010, was diagnosed in April last year, was on Rebif at first and now on tysabri (as of today) so like Gav, any questions, ask away:) xx


Amanda0912
6 years ago

Hi Cariad
Thank you. The support from you guys has already been really helpful 🙂 What made you decide to take disease modifying drugs straight away? Did you have a number of relapses and what do relapses look like for you?
Amanda


Amanda0912
6 years ago

Hi Cariad
Thank you. The support from you guys has already been really helpful 🙂 What made you decide to take disease modifying drugs straight away? Did you have a number of relapses and what do relapses look like for you?
Amanda


Amanda0912
6 years ago

Hi Cariad
Thank you. The support from you guys has already been really helpful 🙂 What made you decide to take disease modifying drugs straight away? Did you have a number of relapses and what do relapses look like for you?
Amanda


Amanda0912
6 years ago

Hi Cariad
Thank you. The support from you guys has already been really helpful 🙂 What made you decide to take disease modifying drugs straight away? Did you have a number of relapses and what do relapses look like for you?
Amanda


Cariad
6 years ago

Hey Amanda:)Glad you’re feeling welcome already:)I was recommended by my neuro to start disease modifying drugs (DMDs)as I had an very active start to my MS. My MRI showed lesions on my brain and the bottom of my spine already. I had my first relapse in oct 10, then Jan 11, March 11, July 11, Sept 11, Nov 11, Dec 11 and am just coming to the end of the Dec one now. Relapses for me have all been severe ranging from severe sensation problems-ranging from uncomfortable to very painful, (all parts of my body at some time), sight problems – blurry vision, double vision etc, being unable to move my arm or leg, being wheelchair bound etc…all in all, it’s been a rollercoaster. They’ve all also lasted up to 6 weeks at a time plus ‘recovery time’ after them so seriously hamper life – both personaly and with work. Every relapse you have leaves damage behind so as I am having so many, the longterm build up of that damage plus the severity of the relapses seemed to leave no choice but to try a DMDs. If you are one of the lucky ones who has perhaps one relapse a year then obviously, the pros and cons will be very different but I just wanted to give myself the chance to have a life not dominated my by MS. Also, for the DMDs, there weren’t really any significant risks, had the ease of coming off them as and when myself and my boyfriend want children etc…Anyway, any more questions, just message me – either privately or on here? x


janep
6 years ago

Hi Amanda, welcome to shift! I’ve been diagnosed four and a half years now and am on my second DMD (avonex, was previously on copaxone for 2.5 yrs) and like you, all my symptoms to date have tended to be sensory.

Also, if you want to know more about the various drugs- this site is really good- http://www.msdecisions.org.uk
Good luck! xx


Amanda0912
6 years ago

Hi Jane. Thank you for your message. I was reading around this site yesterday and think Avonex will be the most suitable drug for me.
If you don’t mind me asking, how long after diagnosis did you start taking DMD and do you feel it has reduced your symptoms and relapses?

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