Forum

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 husband.

Hi

If the neurologist is wanting to talk about alternative treatments, then it’s not too likely that you are about to be diagnosed with PPMS.

So assuming you’ll be diagnosed with MS, and the neuro wants to talk about treatment, it’ll be RRMS. I know that when you think about relapsing remitting MS, you think about symptoms that entirely disappear, but that’s not always the case. Recovery from a relapse can be incomplete.

So presumably you’ll be looking at the DMDs that don’t lower your white blood cells. It could be that you’ll be put forward for Tysabri. Which would be great.

If you haven’t previously, look at https://www.mstrust.org.uk/understanding-ms/ms-symptoms-and-treatments/ms-decisions/decision-aid This lists all the DMDs, if you are familiar with them before your meeting, you’ll have a better idea about what you’d prefer to take, just check all the potential side effects. If they are likely to lower WBCs, in particular lymphocytes, then you’ll probably not be able to take these.

If I’m completely wrong and you are in fact diagnosed with PPMS, then I apologise for leading you astray, but I truly think that if the neurologist thinks you are PP, s/he wouldn’t be talking about treatments.

Best of luck for Friday.

Sue

1 Like

Thanks Sue.

When I last saw her in January 2017 and asked about PP v RR she said that she wasn’t keen to label. I guessed that was because I wouldn’t be eligible for DMTs if I was PP plus that’s probably difficult to diagnose especially in the absence of the more typical mobility issues.

To complicate things further, I did have an episode of pins and needles in both lower legs in 1999. This was investigated but, and I only found this out since my current symptoms were investigated, I only had a lumbar spine MRI then. Therefore, my neurologist had been reluctant to rule it in or out. If that was a relapse, I suppose that I could now be SPMS.

I know that I’m overthinking things but can’t help worry about being misdiagnosed especially with the updated criteria. Yes I’ve got oligoclonal bands in my CSF but they aren’t exclusive to MS. Before my LP, my neurologist wasn’t totally convinced that my reported non-specific white matter changes were lesions consistent with MS. I’ve only got 2-3 possible brain lesions and spinal MRI reported as normal.

I am not sure I’d be eligible for Tysabri. Isn’t that for highly active MS? My symptoms are quite mild at present and I’d obviously like to keep it this way. Do you think that she’ll not be prepared to let me try another that might lower my wbc and just monitor closely?

Thanks again for listening.

Oh and forgot to add that my Mum has PPMS so that’s also being added into the mix.

Hi

I don’t think a parent with PP makes it more likely that you’d also have PP as opposed to a different flavour of MS.

If it’s progressive, then SP is far more likely as you’ve been diagnosed with CIS (therefore a relapse if it’s now MS). Tysabri is for people with active MS who are having relapses and who have ‘failed’ on another DMD. So to be honest, it will depend on your neurologist as to what s/he is prepared to sign off on.

I very much doubt that you could be considered for another DMD that could lower your lymphocytes. Certainly the discussions I had with my neurologist would indicate that once you’ve had low lymphocytes, then it could happen again.

It’s more likely that if the neurologist is acting conservatively, Copaxone would be suggested. Which in itself is a good drug which has very few side effects.

But it all depends on what the neuro says on Friday.

Sue

1 Like

Thanks Sue, I’ve not had any further relapse since my current symptoms started June 2016. These symptoms haven’t remitted. However, I’ll meet the new McDonald criteria so will probably get MS diagnosis. I know that I can’t second guess what she’ll say about treatment I suppose.

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.

I’m in the same situation as you. Diagnosed end sept 17. But what I don’t understand is it’s just over 1.5 Years since first presenting attack and just six months after that my mri showed a gadium enhancing lesion hence the diagnosis, and positive bands. The Neuro letter to gp stated active ms. I’ve heard that they only prescribe meds once you have had two attacks in two years, but I also read that changes on a mri scan also count. So I would have thought I would have fulfilled criteria. Waiting for results of further mri scan from couple months ago. I just don’t understand it and like you I find it is very unsettling. I mean when you ask how you will progress they say they can’t tell , so it just makes you worried that you are a sitting duck as it were with your brain been slowly nibbled away. Like you I would appreciate any comments from others here with more experience.

I don’t know about you, but it makes you want to say that you had numb toes for 2 days or similar so it can be counted.

I can’t see why CIS is eligible for treatment but MS isn’t.

Hi,

There seems to be some room for doubt. Perhaps another scan will be performed with different settings or contrast dye and they’ll bring in other specialists like a neuro-radiologist to examine the plates.

If you have MS, the next step will be to decide which type it is before they can form an opinion on what treatments might be appropriate. I’m not going to jump the gun at this stage.

Whatever happens, this Forum will be open for you. There’s a lot of support, understanding and empathy going on here.

Best wishes,

Anthony

Thanks Anthony, I did ask whether I needed a higher resolution scanner. She said 1.5T was standard. I think a neuro-radiologist is part of the MDT. I just don’t see why my previous 3 MRI scans can’t be reviewed rather than waiting for a 4th scan

It seems utter madness to me that you may not qualify for DMDs even though you (almost) have a diagnosis of RRMS.

Added to which, I thought once you’ve had depleted white blood cells as a result of a DMD, you wouldn’t be a candidate for another drug that can reduce your WBCs. Although that perhaps depends on which WBCs were depleted from Rebif. If it was Lymphocytes, then both Tecfidera and Lemtrada can deplete these. Although Lemtrada fits into a different category as some of the ‘side effects’ are actually part of the intended reaction to the drug.

And Aubagio has the worst relapse reduction rate together with some iffy side effects.

Having looked at the DMD options, I can see why you won’t qualify for Tysabri, but you’d have thought that you wouldn’t qualify for Lemtrada either as your MS isn’t highly active.

So if your drug choice comes down to a beta interferon, Copaxone or Aubagio, in your position (assuming you get a choice) I’d go for either the high risk option of Lemtrada or the very low risk (with low side effects) Copaxone.

I do hope you don’t have long to wait for the next MRI and the subsequent DMD decision. I imagine that if your new MRI shows lots of different lesions (even in the absence of relapses), then you’ll qualify for a decent DMD.

I’ll keep my fingers X’d for you.

Sue

Yes, a Neuro radiologist is part of the team. I’ve been told that they will be looking at my last mri. So for me that’s 3 mris to compare, only had brain ones so far, two with contrast, first one without. Told I have at least 8 lesions. Not sure if that is ms only or ms and migraine ones. Neuro has now referred me for a spine mri which I’m waiting for. I’ve been diagnosed RRMS with first attack of ON, so I just don’t understand the DMD decision process. Got my newly diagnosed day in a few weeks and that’s one of the questions I’ve put on the list to ask. I’m concerned thou as looking at the meds copoxane was the one which I thought seemed the least risky and the med I think I would have liked to start on, but it may be withdrawn looking at the latest NICE guidance. Been told not to worry by my ms nurse, however!

Thanks Sue, I think the ones I’ve been advised that I might be eligible for are those which the MS decisions aid has for active RRMS. Rebif depleted lymphocytes and neutrophils. It was the neutrophils that my neurologist was most concerned about.

I’m guessing that my next MRI will be unchanged as my previous ones have and then what? I’m told there’s a 12 week wait at present. Why can’t they make a decision based on the 3 MRIs they have from August and November 2016 and November 2017. I can understand the second opinion if she’s uncertain but why make me wait yet again? If they agree I do have RRMS, if I’m not classed as active MS I won’t be eligible for any DMTs. This seems madness when I was on one for CIS diagnosis.