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new lesions/symptoms 2 months after diagnosis

Quick background - My girlfriend Liz was diagnosed in August in the US on a business trip, she’s since come back to the UK and been seen on the NHS. In late September we saw a Neurologist [name removed by admin] and he recommended a baseline MRI scan which Liz had last month. She then saw an MS nurse in late November to talk about treatment options and would like to try Tecfidera. The nurse also mentioned that her main port of contact for any worries or new symptoms should be Neurodirect.

Right so back to the present day, [name removed by admin] has since contacted us to say a couple more legions were found since her initial scan in the US. Liz has also just started experiencing a new symptom, a burning sensation in her thigh. We’ve tried contacting Neurodirect but after several tries and being on hold for up to 40 minutes we haven’t been able to get through. We’re not sure what to do? surely she needs a reassessment as this has happened so soon after diagnosis? We are still waiting for Liz’s prescription to Tecfidera too. Any advice would be greatly appreciated.

hi

i would assume that liz’s ms nurse works from UCL.

i’d also assume that her tecfidera will be sent out to her.

it wouldn’t hurt to carry on trying to get through to confirm all my assumptions!

i doubt that a re-assessment will be considered the way to go because if she has been diagnosed RRMS there is only PPMS as an alternative.

it is a very difficult time for you both and the letter you received has just made it more stressful.

please make liz aware that you are there for her and try to help minimise stress because it is the ENEMY!!

make note of any new symptoms so that when you get through to the ms nurse, you will have something to tell her.

wishing you all the best for a stress free Christmas.

carole x

HI MATE,

The NHS in my view is the best system in the world. Yes it has its drawbacks; it is not quick and it is a black hole as far as money goes.

What I’m going to suggest then is diametrically opposed to that view; go private. Costs about £300 but all treatment; drugs; hospital stays after have on the NHS; this is perfectly legal.

Seems drastic but time and tide; you want answers. It looks stupid; someone can’t answer a phone and it may lead to you spending a lot of money.

Two caveats; ask on here for Neurologist recommended in your area and don’t forget to tell them the rest you want on the NHS.

This does not interfere with Liz’s treatment Tecfidera (not spelt like that). Sorry but I’m not a DMD person but she must try and see if it helps her. You don’t need a referral; which brings us to the MRI.

A baseline MRI I presume is a 1.5 Tesla; you really want a 3T scan to get a good resolution.

Good luck

George

Hi

I reckon Carole is right and a reassessment is unnecessary. Your girlfriend has been diagnosed with RRMS and a treatment plan agreed upon.

What Liz needs now is to get the Tecfidera and start the drugs. Preferably before she has any more relapses. It takes a little while for Tecfidera to start actively working to reduce relapses so the sooner she starts, the sooner she’ll be protected.

So in your / Liz’s position, I’d keep trying Neurodirect (who I’ve got no experience with so can’t suggest any shortcuts) but also try contacting the MS nurse she saw in November and try to get help in obtaining the drugs.

While George would be right if you were looking for a firm diagnosis, Liz already has that, so seeing another neurologist would be like starting the process all over again. A waste of money and a set back in time.

Sue

Thanks all for your responses. Going private unfortunately is not an option for us. The new burning thigh symptom has since left but we’re still not closer to getting Liz on Tecfidera yet. We’ve in fact just received a letter this week stating her next UCLH appointment is June 14th! We’re really not happy as this is 9 months since diagnosis, there’s also no clarity that she would even get her prescription then… Is there anyway to get a sooner appointment?

I’ve just had a look at the NeuroDirect website: https://www.uclh.nhs.uk/OurServices/ServiceA-Z/Neuro/MS2/Pages/ContactMSteam.aspx

There are lots of contact details, I suggest giving them a call, probably on Tuesday now. You could ask whether Liz is due to start the agreed upon treatment soon. I can’t see that she’d need to see the neurologist again before starting the Tecfidera. Since she’s been diagnosed, you’ve (she’s) agreed what DMD she’s to start. Surely it’s just a matter of liaise with the MS nurse and drug provider?

sue

I believe she will need to have base line blood tests too, as she will need to have them checked every 3 months. Best bet is to contact your neurologist secretary or leave a message with your ms nurse to find out if there is a plan in place to start. I started within 4 weeks after my neuro gave the go ahead. Good luck Sharon

Let us know how you get on. Sharon