smurf69 09/02/18
Last reply 2 months ago
Sh*t scared

Don’t know if anyone remembers me but I’m currently diagnosed CIS. However, following a telephone conversation with my neurologist in December when she took me off Rebif due to low wbc, I’m fairly sure that I’ll be diagnosed with MS soon as I fit the criteria of the updated McDonald criteria 2017.

Having been off Rebif since December, I’m due bloods on Monday and have an appointment with the neurologist and MS nurse next Friday. I don’t know why I’m that worried as I’ve not changed but the criteria has. However, I’m nervous about my appointment. She said we will talk about alternative treatments. My symptoms are altered sensation in my arms/feet mainly at night which haven’t really remitted. Can’t help worrying that I’m PPMS so not eligible for treatment.

Sorry but it helps to post rather than keep burdening my husb

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stumbler
2 months ago

@smurf69 , it’s understandable to be apprehensive. But, you’ll still be exactly the same person after the appointment, as you were before it!

But, it’s always a good strategy to get your fears written down, as you have done. It sort of exorcises you. 😉


smurf69
2 months ago

@stumbler I know you’re right. I keep telling myself that it’s not me that’s changed just the criteria. My last MRI was unchanged and I’m generally the same. It’s just having it confirmed. I don’t want her to say the words if that makes sense.
Thanks for listening though it does help 😊


stumbler
2 months ago

@smurf69 , her words will just be her opinion/point of view. It won’t change anything about how you are, although it might make the future more……decisive.

Look for the positives. 😉


smurf69
2 months ago

Thanks @stumbler, you always seem to put a positive spin on things. I do keep thinking that it’s never good to have anything wrong but always best to know. Knowledge is power etc. Also, I’m fortunate to have a forward thinking neurologist who seems prepared to apply the latest criteria. However, I can’t help worrying about being misdiagnosed. Yes I have oligoclonal bands in my CSF but they aren’t exclusive to MS. Before my LP, my neurologist wasn’t totally convinced that the reported non-specific white matter changes were lesions consistent with MS.


stumbler
2 months ago

@smurf69 , Neuros have to be careful about giving a formal diagnosis. Once given, it can’t be taken back, so they have to be sure.

And, you’re so right, knowledge is power, so prepare to be empowered. 😉


smurf69
2 months ago

Thing is @stumbler, as we all know MS is very commonly misdiagnosed.

Do you have any idea which DMT I’ll be eligible for? Do you think she’ll be happy for me to try another one that could lower my wbc?


cameron
2 months ago

Remember that PPMS is by far the less common form of MS. However, if you’re anything like I was at dx, your worst fears can dominate completely – heart over head, as it were! I’m sure that this anxiety is a part of the condition and it just has to be managed. From what you say, you’re in a good place to do that. With a responsive and forward-looking neuro team you can feel confident you’ll be offered the best available treatments . Just frustrating that while you’re waiting, time seems to stand still…… Big hugs, x


stumbler
2 months ago

@smurf69 , DMT options are something to discuss post-diagnosis.

As you are not diagnosed yet, and you’ve been on Rebif, I would agree that you do have a forward thinking neurologist. So, they do appear to be worthy of your trust and to act in your best interests……..


smurf69
2 months ago

Thanks @cameron, it’s great to know that we aren’t alone on here. My OH says he’ll be there for me whatever but doesn’t want to read about DMTs etc even though they indirectly affect him.
@stumbler, I agree that I’ve been fortunate to have been offered treatment whilst CIS but it was left down to me whether I opted for treatment and, if so, which one out of the few I was eligible for. I thought that everyone with CIS was offered treatment tbh


stumbler
2 months ago

@smurf69 , it’s a recent change that CIS could be treated with DMTs to try and avoid progression to MS. And, it seems that it is only pro-active Neuros that follow this.

However, the available DMTs for CIS were restricted to the “first line” DMTs.

There should be more options available if MS is diagnosed.

You could get yourself ahead of the game by reading this :-

https://support.mstrust.org.uk/file/store-pdfs/MS-Decisions-ALL.pdf


smurf69
2 months ago

Thanks @stumbler, whilst I’m aware of DMTs, I’m unsure what I’d be eligible for given my symptoms appear pretty mild. Also, not sure what’s available locally as guess that has an influence too. Given my low wbc with Rebif, I may only be offered Copaxone although she also mentioned tablets when I spoke to her in December.


cameron
2 months ago

Well, Copaxone worked for me for many years (when it was the best option on offer), but it maybe won’t be available soon if NICE get their way. The move is towards stronger treatments, which in the end are more cost-effective. Anyway, as your team is obviously up to speed, I’m sure all options will be on the table.


smurf69
2 months ago

Sort of want Friday to come quicker but then for it to not come at all. I’m concerned that given my lowered wbc on Rebif, she might be keen to avoid any other DMTs that can also lower them. Don’t want to read up on all options until I know what’s offered. I’m thinking that I’ll see what’s said and then ask to see MS nurse once I’ve made a decision. I’m also hoping they’ll guide me too. Appointment is with both neurologist and MS nurse on Friday.
What are others experience of being offered DMTs? Did you get help in choosing or was it up to you?


stumbler
2 months ago

@smurf69 , Friday will come when it’s good and ready. Nobody can change that.

But, use the next few days to read up on the Disease Modifying Therapies (DMTs), so that you can take an active part in any related discussions.

It’s your body and your choice, so don’t get pushed in a direction that you’re not happy about.


smurf69
2 months ago

Thanks @stumbler, I’ve got a very basic understanding of the common DMTs but have no idea what will be offered so don’t want to pin my hopes on one over another. If that makes sense. Having said that, I do agree it’s up to me to decide and make an informed decision. How much guidance do you think I’ll get? I got none choosing Rebif. It was totally down to me whether I had treatment or not and if so which to opt for from a small choice.


stumbler
2 months ago

@smurf69 , your Neuro seems well on the ball, so she’ll probably make good suggestions. But, you can still say if you don’t like one over another!

You won’t have to make a choice on Friday, so attend the appointment with an open mind. 🙂


smurf69
2 months ago

@stumbler, my plan is to see what’s offered, ask questions and then go away and research them. I’ll ask to see MS nurse in a couple of weeks to further discuss and get the ball rolling. It took a while last year to actually start the Rebif. Saw neurologist on 10th Jan, MS nurse on 31st and started Rebif end of Feb. Going away 4 weeks today so guess I’ll start after my hols anyway.
Thanks for your supportive words.


smurf69
2 months ago

Well I saw neurologist and MS nurse yesterday. Long story short is that she thinks my MRIs show lesions consistent with MS in brain and cervical spine. However, as they’ve not been reported as that, she wants another MRI and to discuss my case with her colleagues. Then once that’s done, we can talk about which treatments I’m eligible for.

To be honest, I’d been expecting an ms diagnosis due to criteria changing recently and my positive lp counting towards it now. However, if she’s unsure, I’m pleased she’s getting 2nd opinion.

Symptoms are altered sensation in lower legs/feet and arms/hands numb mainly at night. This is the same on both sides. She thinks it’s the lesion in my cervical spine that’s causing that which makes sense.

The worst bit was that she said that an ms diagnosis wouldn’t automatically make me eligible for any treatment. I’m not entirely sure why not if I was eligible with a CIS diagnosis. It’s something to do with 2 relapses within 2 years. However, they’ve given me treatment options to research but think decision will depend on next scan. When they checked the prescribing criteria, I might be eligible as I failed on a first line treatment due to side effects (low wbc on Rebif). So far, the MS nurse indicated that I’d be eligible for Copaxone, Rebif, Avonex, Plegridy, Aubagio, Tecfidera and Lentrada. I’m not sure if I’ll be eligible if my MRI is the same as previous scans but her colleagues agree it’s MS as don’t think I fit criteria for active ms.

Any help and thoughts gratefully received.


stumbler
2 months ago

@smurf69 , I’m sorry, but I find your Neuro to be over-cautious and very conservative. The McDonald Criteria (https://www.mstrust.org.uk/a-z/mcdonald-criteria) is quite clear about the diagnosis of MS.

Were there any changes on your latest MRI scan to meet the “Dissemination in time” criteria? In any event, the positive Lumber Puncture should have provided the appropriate confirmation.

If there has been further activity, then waiting to start treatment until yet more activity has occurred does question the care that you are being offered. The latest thinking is to hit MS hard and hit it fast!

There’s a lot of information about the Disease Modifying Therapies (DMTs) here :-

https://www.mstrust.org.uk/understanding-ms/ms-symptoms-and-treatments/ms-decisions/disease-modifying-drugs

You might want to contact your MS Nurse to discuss this latest consultation. They may be more forthcoming when not faced by a Consultant. You should be able to find their contact details here :-

https://www.mstrust.org.uk/understanding-ms/living-ms/map-ms-services

I hope this helps rather than heap pressure on you. 😉


smurf69
2 months ago

@stumbler, my neurologist has been proactive up until now and offered DMTs for CIS which I know isn’t always the case.
Whilst I’m pleased she’s getting a 2nd opinion if unsure, I don’t know why she can’t use the 3 previous MRIs I’ve had since August 2016. I do have the contact details for my MS nurse as had been seeing her 3 monthly whilst on Rebif. I email her regularly with queries.
The thing I’m most concerned with is that I don’t think I fit the active MS criteria.


cameron
2 months ago

I’ve posted this before so apologies if you’ve read it- when I was in hospital undergoing the MS tests, my consultant came round with his bevy of students. They were already pretty sure it was MS. I’d had symptoms since the March, seen a neuro locally in September who so put the wind up me (his parting words: ‘go home and wait for things to happen to you’) that 24 hours later I went into a mega relapse. My GP was appalled at how I’d been treated and referred me to Queen Square, where I was admitted in the October. What the consultant said to his students was:’ It’s difficult to know with this lady whether she’s still in the same relapse or whether there were two separate neurological events, so I’m going to treat it as two events so that she qualifies for treatment’. It looks as though your neuro is not exercising any discretional judgement. If you aren’t offered the treatment you want because she’s sticking too rigidly to the party line, my advice would be ask around (on this forum) to find a more sympathetic consultant and get a second opinion from him/her. You can do this on the NHS but a quicker way would be to have a one-off private consultation and then get on his/her NHS list. This would probably mean changing neuro teams and you’d be going out of your area, but this needn’t be a big deal. You’re not going to have that many appointments in the year. I travel over 100 miles to get to Queen Square, but thank goodness I’m not in the care of the first neuro I saw. It’s VITAL you get the right drug. @stumbler‘s assessment of the situation is spot on. xx


smurf69
2 months ago

Ok I’ve emailed my MS nurse to ask if my 3 previous MRIs have already been discussed with colleagues. These scans have all been stable to my knowledge and have been reported as non specific white matter changes with the spine reported as clear. Having said that, she did point out what she thinks is a lesion at the top of my spine.
I understand that oligoclonal bands can now substitute for dissemination in time but she’s looking for dissemination in space. I’ve been off the Rebif since December. I did ask about starting another first line treatment while waiting for the next MRI and results. They explained that they were reluctant to chop and change drugs which made sense. I’m guessing that if my next scan shows changes, they’ll recommend the most effective drugs. My main worry is that I won’t meet the active MS definition so she won’t be able to prescribe anything. This seems crazy when I was eligible for drugs with a CIS diagnosis. My MS nurse did say that I could be made eligible as I failed on a first line treatment. She said it was a get out of jail free card. When the neurologist said that I was stable, I responded by saying that I’d like to keep it this way.


stumbler
2 months ago

@smurf69 , the most important person in all this is you. And, how you feel.

You deserve an explanation. The Lumber Puncture and the oligoclonal rings suggests that there is some activity.

I understand the need for a review, as a formal diagnosis is for life. However, if there isn’t a diagnosis of MS, then surely the default diagnosis is still CIS. So, some treatment should be considered.

Did they put any timescales on their deliberations?


smurf69
2 months ago

@stumbler, apparently there’s a 12 week wait for the MRI. I just don’t know why they can’t decide from the 3 I’ve already had – August and November 2016 and November 2017. They explained that treatment options could depend on any new activity. I don’t want to be misdiagnosed but equally don’t want to be a sitting duck waiting for further activity. I just want a decision and to start the most effective treatment.


stumbler
2 months ago

@smurf69, put that concern to your MS Nurse, using those words. Sometimes, we have to start rattling cages to make any progress…………


smurf69
2 months ago

@stumbler, think I’ve done just that via email. I think they both know that I like to be an active participant in my care.

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