Last reply 1 year ago
CIS

Been reading the forums for a while and getting lots of helpful info. Here is my story:

I saw the neurologist on Tuesday for a follow up after having MRI in August, repeat MRI in November, EPs and LP. Symptoms were sensory started last summer and mainly resolved except odd sensations in both arms overnight in bed. I also had another episode of altered sensation in my feet in 1999 which was attributed to a partially slipped disc following a lumbar spine MRI.

Both MRIs are the same with some 2-3 possible lesions, EPs were normal and LP oligoclonal bands in csf not in serum. She’s decided to diagnosis me as CIS at present though think she’d have diagnosed MS if more evidence around 1999 episode.

Plan now is MS nurse to talk about whether to start treatment. Although I was half expecting to be diagnosed I’m still feeling a bit shellshocked to be honest and not sure where to start.

The neurologist is leaving it up to me about starting DMDs. She said being diagnosed with CIS makes me eligible but the decision was mine. Think she said current recommendations were to start but can’t really remember. I’ll do some reading and see what the MS nurse says when I see her.

A few question sif anyone can help me please:
Does anyone have any recommendations of which DMD to start?
How do you actually get the drugs? Will the MS nurse give me a prescription? Will it be for a month’s supply or 6 months? Will I need monitoring? Will that be at the GPs?
Do I need to tell dvla?

Sorry for all of the questions.

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stumbler
1 year ago

Hi @smurf69 and welcome.

Some Neuros are very pragmatic and take a very proactive and considered view. It seems it is seen as a good move to prescribe DMDs for an initial diagnosis of CIS. This may prevent/delay and progression to MS.

The DMDs approved for this scenario are usually the first line treatments, i.e. Copaxone or an interferon. I’m sure your MS Nurse will elaborate.

The MS Nurse will manage the prescription and the DMD will be delivered monthly for you.

Yes, you will need monitoring. This is usually a monthly blood test, requested by your MS Nurse. After a few months, this may switch to bi-monthly or quarterly, dependant on the results.

By “postponing” a diagnosis of MS, it avoids giving you a label which cannot be taken back. A formal diagnosis impacts insurance proposals, amongst other things.

The DVLA aren’t that specific over which neurological conditions need to be reported. So, I’d give them a call and pose them the question – 0300 790 6806. They won’t take your licence away. 😉


smurf69
1 year ago

Thanks stumbler, do you have any recommendations for first line treatment? When you say delivered to me do you mean to my local chemist or do my door? Don’t I have to pay a prescription charge?

I am grateful for postponing the diagnosis at present though I am guessing this will come in time. I already have life insurance cover for the mortgage, was declined income protection following the 1999 episode and have an annual travel insurance policy. I am guessing that I will need to call the travel insurance company to add on the CIS.


flipflopfan
1 year ago

Hi and welcome!!
my journey with MS started as CIS but i do remember them saying that drugs were an option at yhat point. Ive since been diagnosed with MS which to be honest meant that I had the label. In reality personally I’d rather know and move forward rather than postpone the inevitable but I appreciate everyone is different.
Yes you have to declare it for insurance purposes but I haven’t noticed it being more expensive really. There are some fab insurance companies now insuring forpre existing conditions which is brilliant and was really reassuring.
I am on Copaxone – the MS nurse / consultant should talk through which drugs are open to you depending on your benefit/risk/lifestyle etc. I opted for Copaxone so that i could have kids as some drugs would not ne a good choice in that respect. My drugs are delivered to my house monthly as they are stored in the fridge. Of note i have still managed to travel this year with drugs…just have to be more organised and research accommodation and wild camping is probably out! I would write all your questions down and take to the meeting with the MS nurse…then you can make informed decisions on what will work for you and your lifestyle. The biggest bit of advice my MS nurse gave me was choose your lifestyle first and get drugs that fit it rather than the other way round. Sound advice.
DVLA need to be informed via a form and now I am on a 3 year licence which will be reviewed…. Im not to hung up on this as a family friend who has had MS for many years and is still driving.
Hope that helps and although the shock of the diagnosis is hitting you there are fabulous people out there to support you and the decisions you need to make


stumbler
1 year ago

@smurf69 , wait and see what DMTs are offered, then you can do your research. Personally , I wouldn’t make a recommendation. 😉

The DMTs are normally delivered to your door. Or to your GP, if a home delivery is not logistically possible for you. I was never asked to pay a prescription charge back in the day when I was on a DMT.

Any existing life insurance policies will be OK, as they were taken out before these problems. But, it would be wise to chat to the travel insurance company.


smurf69
1 year ago

Thanks both.
Flipflopfan – I didn’t mean postpone the inevitable just that I don’t want to be diagnosed as MS if it isn’t YET! If that makes sense. I am guessing that given the positive lp and brain lesions it’s only a matter of time. From the reading I have done, you actually are eligible for more DMTs with a MS diagnosis rather than CIS.

I think that I will ask the MS nurse about informing the DVLA as CIS isn’t listed and I only have sensory disturbance at present.

Stumbler – I thought that I would need to pay a prescription charge and would get it from the local chemist. I wonder how long I will have to wait to see the MS nurse. I do have her number and email as I have contacted her during my investigations but don’t want to bug her yet.


stumbler
1 year ago

@smurf69 , MS Nurses are there to be bugged. They only deal with MS patients and are there to support and advise.

But, yes, try not to go over the top. They’ll expect you to be pretty demanding at this stage, but this will drop off as you become “comfortable” with what’s going on.

It’s also wise to chase things up from time to time. Things can get overlooked, so it’s down to us to make things happen. 😉


smurf69
1 year ago

@stumbler how long do you think I’ll wait to see her or is it how long is a piece of string?


stumbler
1 year ago

At the moment, it’s a piece of string, @smurf69 . But, if you were to give her a courtesy call, she might tell you………… 😉


smurf69
1 year ago

@stumbler – maybe a quick email is called for.
On phone to travel insurance and am covered for a Florida trip we’ve already booked. She’s not heard of CIS so has gone to speak to her supervisor.


smurf69
1 year ago

Ok well got travel insurance sorted. I’m covered for our April Florida trip as was diagnosed after the trip was booked. If I want to book any further holidays the premium is £25.20 but she said it’s pro rata so don’t need to pay it until just before booking.


stumbler
1 year ago

Best to have it all sorted upfront, eh, @smurf69? 🙂


smurf69
1 year ago

@stumbler got to admit that I thought I’d have to pay something extra to cover this holiday even though it was booked before diagnosis. I know they’d have to cover to cancel but thought they’d ask for me to pay to cover it to go away. I asked her to clarify things several times so think I’ve got it clear. She only went through medical screening and quoted the additional premium because I asked her to. She said that only needs paying if we book any future holidays before our policy is up for renewal in October.


stumbler
1 year ago

It’s good to be up-front and to be pleasantly surprised………..


spunky
1 year ago

The first line DMTs I was recommended for my CIS were Aubagio and Copaxone. I I live in Canada. I would be curious to hear what your MS neuro recommends. I chose Aubagio as I preferred to temporarily lose some hair over giving myself a shot every day. Needles make me nervous although I do have monthly blood tests. Good luck!


smurf69
1 year ago

Thanks @spunky, I think my options will be the interferons and copaxone which are all injectables. Can’t say I’m looking forward to it but guess I’ll get used to it in time. I won’t see my neurologist for 12 months now unless a need arises as in the U.K. the MS nurse is the person I’ll see next to discuss treatment options.


smurf69
1 year ago

Thought I would update. I saw my MS nurse on Monday and talked through what I was eligible for although she didn’t really help me decide. She is due to go on holiday tomorrow so had originally said that I need not decide until she was back on 20th Feb. I was considering this as I have a holiday in April so thought that the drugs would arrive too close to that to start them. However, I gave myself a kick up the butt and felt that I was in danger of overthinking things. Anyway, I emailed her that evening, chose rebif and signed the paperwork on Tuesday. Just more waiting now. Does anyone have any idea how long this bit is likely to take? She said that a nurse will contact me but had no timeframe.

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