CIS

New diagnosis and before diagnosis
1

Thought I’d update my situation as posted before with various questions. Thanks again for taking the time to answer them.

I’ve seen the neurologist today for a follow up after having MRI in August, repeat MRI in November, EPs and LP. Symptoms were sensory started last September 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.

Do I need to tell dvla?

2

Hi I’m sorry you’ve had your suspicions confirmed, not what you were hoping to hear I don’t suppose. However are they going to start you on treatment straight away? If so that’s very positive at least being proactive is good.

Sorry can’t help with your questions but im sure someone will be along who knows shortly.

3

Thanks for your reply. 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.

Does anyone have any recommendations of which one to start?

4

tecfidera is one of the drugs that you can take earlier than others.

lemtrada and tysabri are usually only available if you have tried one of the others and it has failed.

if you look at the benefits - higher reduction in relapse rates it will help you make your decision.

tecfidera has a good rate of relapse reduction and it is one that you can take earlier.

i’m a bit biased so do your own research.

i think the ms trust do a leaflet about choosing your DMD.

carole x

5

Thanks Carole, think because I’m CIS at present I’m only eligible for the interferons. Is that not right?

6

i don’t know if the beta ferons are the only ones available for CIS.

makes me think they must have a lot of old stock!

ask if you can have tecfidera and if not, why not?

carole x

7

Thanks Carole, I’ll certainly give it a try. Guessing it’s only a matter of time given positive LP and 2-3 brain lesions before I get a diagnosis of MS. Then I guess I’ll be eligible for tecfidera.

8

Another query I have is how to you actually get the drugs? I am awaiting an appointment with the MS nurse. Will she 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? Sorry for all of the questions.

9

hi smurf

(love the image of you as a little blue person)

the DMDs are sent directly to your home once the ms nurse authorises it.

so no queuing at the chemist.

carole x

10

Thanks Carole, it was my nickname from school tho those years are long gone - 69 is my year of birth. Thanks for info re drugs. Do you just pay prescription charge?

11

hi smurf

i don’t pay anything (god bless the nhs). it has to be passed by the risk sharing scheme and one you’re accepted it is delivered once a month free of charge.

hopefully teresa may won’t mess with it but i’m suspicious of her.

carole x

12

Oh right didn’t know that. The MS Trust site talks about prescription charge unless you’re eligible for free prescriptions which I’m not.

Not sure which I’m going to opt for. Think I’ll speak to the MS nurse. I’ve a big list of questions already. Don’t think I’m eligible for tecfidera but will ask and also whether I could switch once get an ms diagnosis.

Are there any questions you can think of that I should ask?

13

if you have peeing problems ask to be referred to the bowel and bladder clinic.

if you have any difficulties getting about safely in your home, eg stairs and shower, tell your nurse who may be able to send an occupational therapist. the OT can arrange for grab rails to be fitted in your bath/shower at no cost to you.

you could tell your nurse if you have mobility problems and h/she might arrange physiotherapy for you.

if i think of owt else i’ll get back to you.

carole x

14

Thanks Carole, my symptoms seem mild compared to many others. I only get altered sensation in my arms and hands mainly at night and my lower legs. No mobility problems or bowel/bladder issues yet.

My neurologist has said to carry on with my life and not let it stop me which it hasn’t so far. My legs do buzz if I walk too far. My mum has PPMS and has had for nearly 30 years now. Her main issue was mobility and she’s now using a wheelchair when outside.

I think it’s only a matter of time before mine is MS given the positive LP and 2-3 brain lesions coupled with the possible episode in 1999.

15

Hi Smurf69

I have Cis and am on Tecfidera I’ve not had any relapses just a few extra symptoms,i.e. Nerve pain in hands and vibrating in my legs when I bend my neck forward, so you should qualify, side effects for me not many really just a bit of flushing and occasional indigestion. I’ve been on Tec for five months so, it’s so easy just a capsels twice each day with food.

The sooner you start the better for you.

Good luck

Ann x

16

Hi Smokey, how did you manage to get tec with CIS diagnosis and not MS? I thought it was just the interferons that you could get until MS diagnosis. Be really interested to hear how you’ve got it. Thought I’d have to wait til things developed into another episode or more lesions.

17

You know, given that the interferons and Tecfidera are equally available for people with RRMS, I’d be really surprised if a diagnosis of CIS gives you eligibility to one of the interferons / copaxone and not Tecfidera. Surely a first line drug is a first line drug?? I’d be asking the question for sure. Of course it could be one of those poxy postcode lottery things. Unless as Carole suggested, maybe they’ve got a job lot of ye olde interferon in’erjection thingys to get shot of.

Sue

18

Hi Sue, I’ll certainly ask when I see the MS nurse but the MS Trust decision aid doesn’t show tecfidera as being an option. Is it far superior to rebif and copaxone?

Anonymous, have a look at the MS Trust decision aid and you’ll see what you’re eligible for.

I’m hoping that smokey will come back and give me advice on how they got tecfidera for CIS

19

I think a lot depends on your neuro and your MS nurse. I was put on Tysabri right from the get-go. My neuro is a very “go in early - go in hard” kind of person and the rest of her team are equally gung-ho. My initial neuro, who was a bit on the fence between CIS and full diagnosis, was a bit more reluctant to start medication of any type. (Although that may have had something to do with my planning to move to another part of the country so there was a pretty obvious element of “this isn’t coming out of our budget” involved. Cynical? Moi?)

20

My neurologist is leaving it up to me to decide but said that I’m eligible with CIS. She suggested doing some reading and discussing it with the MS nurse though don’t know when I’m seeing her yet. Not really sure what to do, have a holiday to Florida booked for April so unsure whether to start them before that or not. I suppose a lot depends on when I see the nurse first.

She’s also prescribed pregabalin but I’ve not taken them yet. Can anyone give me any first hand info re side effects. I see that one is weight gain so not keen on that as I lost 3 stone last year.