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I’m back

Doubt anyone remembers me but I’ve posted on here since 2016. Long story short but got CIS diagnosis in January 2017 and started on Rebif until December. Taken off due to low wbc meaning I couldn’t have elective surgery. Plan then was for 6 monthly mri/appointments and close monitoring. My case has been now discussed twice at a local MDT meeting. I thought my scans had been stable so wasn’t expecting much in the latest letter. However, I’ve come home to a letter saying they’ve noted a subtle change in my cervical spine so I now meet the criteria for relapsing remitting ms. Although I’d been expecting this at some point, I’m a bit floored by the letter. My neurologist is planning to see me but I don’t yet have an appointment. I’m unsure if I’ll be offered any treatment as don’t think I’m classed as active ms but can’t have interferons due to previous history.

I’m not sure why I’ve posted but think I’ll need to access everyone’s support again please. My symptoms are mainly altered sensation arms/legs at night and sometimes during the day. I’m unsure what I’m meant to report as not sure what’s usual for me now anyway.

Sorry to ramble :frowning:

hello smurf

i remember you being on here.

there are a lot of new options for DMDs now.

for example tecfidera, gilenya and others.

my version of normal is constant tingling in hands, burning feet, zombie walk and other random sh*t!

ramble on smurf, we all do that!

carole x

Hello again Smurf

How could we forget a name like Smurf?

You might be right that you won’t be offered any DMDs. The criteria is usually 2 relapses in the last 2 years. But often neurologists manage to get you categorised as ‘active’, based on new lesions and get you onto a DMD anyway.

Having had a problem with WBCs in the past may take some of the drugs off the table. It may depend on what type of white blood cell was depleted. If it’s lymphocytes, then some DMDs will perhaps be out (eg Tecfidera), and if it’s neutrophils then other (eg Gilenya) could be ruled out since these are side effects that can occur with these specific drugs.

But there are others that don’t have the same effects. So you may get onto a decent treatment.

Whatever happens, as you know, we’re always here.

Sue

Thanks both, to be honest I’m a bit annoyed to be diagnosed via letter especially when the neurologist had written to say latest scan was static. Now they’re saying that it’s been reported that there are subtle changes to my spine that, in retrospect, can be seen on earlier scans. I’m not sure I’ll be offered any treatment as don’t think I’ll be classed as active. At present, I don’t yet have an appointment booked to be able to discuss this though. I do have altered sensation that comes and goes but not sure what’s normal so don’t report it

I’m trying hard not to stress as know it’s the worse thing. To be honest though, I didn’t sleep well last night. I can’t seem to shift the negative thoughts in the night. It’s a lonely place the dark of night I’m sure I’ll be fine and box it up again soon

Thanks though, it does really help to offload here. I’m trying not to overburden my family. My parents are elderly with their own issues. I don’t really want to worry my children (in their 20s) as don’t want them stressing too much about me.

I remember you!! I started on here since 2015 and have been on and off! Its nice to see a familiar name! Im back because i got another attack of symptoms. Last time early 2017 my neuro left me with the choice to do an lp or repeat mri while saying " i know you definately dont have ms… you might in the future but not now" so i refused the tests. Now 2 years later im back and had a worsening of my symptoms. So ive been refered again… im on gabapentin and have to wait to see him on 28 feb

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Hi Cosine, sorry to see that you are having new symptoms and are having to wait until Feb to be seen

I called the neurology secretary and explained how unhappy I was to be diagnosed via letter especially given that the neurologist had written to say my latest scan was static I wasn’t due to see the neurologist until Feb too but I said I couldn’t just wait until then to know if this is a definite diagnosis. She was very nice and said she would speak to the neurologist and let me know plan. She did say that it might be because I’d see the nurse to discuss treatment options.

Thing is now I’m not sure if I’ve been diagnosed or not. I’ve re-read the letter several times and it says “supports the diagnosis or relapsing remitting ms”. Does this sound like I’m definitely diagnosed or not?

I have been diagnosed with me but how do I know it’s not ms? The symptoms are very similar and I have relapses then good periods,

I think the word “supports” sounds like they are thinking about it. And need to gather more evidence? Maybe? The uncertainty is so frustrating isnt it!How do you cope?

Ask your GP or neuro next time you see them.

Sorry that should have read “supports the diagnosis of relapsing remitting ms”.

I’ve been told that I have some brain lesions by my neurologist (but only reported as non-specific by radiologist) and one lesion suspicious of demyelination by the neuro-radiologist at the earlier MDT meeting. Now, despite saying that my latest MRI is static, the MDT meeting have noted that a subtle change on my cervical spine being reported by the radiologist can be appreciated on earlier scans. I’ve also got positive oligoclonal bands in my CSF.

I an waiting to hear about an appointment but am unsure whether that’s me diagnosed or not!

Smurf

I think you’ve been diagnosed. As usual, the doctors have made an assumption that they had already diagnosed you (just not told you - not unusual). Which is why the letter states, ‘supports the diagnosis of relapsing remitting MS’. They are referring to a diagnosis that they’d probably already made, only weren’t in possession of sufficient evidence to declare it. If this makes sense.

When you do get the neurology appointment, double check with them, but I think you’ll find you have have been (crappily) diagnosed.

Your next task, should you want them, is to get DMDs. If you do want them, think back over the last year, have there been any signs of new or repeated symptoms? If so, make sure you mention them. Also, your newly spotted spinal lesion, do you know if that was clearly a new lesion, or an enhancing lesion? If so, tell the neurologist that you would like treatment to prevent future relapses.

All the best

Sue

Hi Sue,

The subtle change on my cervical spine that has been noted on my recent scan is “a very subtle area of T2 signal change at cervical 2 level. Looking retrospectively the subtle finding can be appreciated on the MRI scan dated …” (and lists previous MRIs back to my original scan). It goes on to say “However, this is the first time it has been officially reported by the radiologist” Don’t know if you can make head or tail of that?

i can recall that at an earlier appointment my neurologist said that I might not be eligible for treatment even with an MS diagnosis as might not be considered active. I do have odd symptoms of altered sensation but they come and go so I’ve not reported them. My initial symptoms were throbbing/numb arms and altered sensation in lower legs - both overnight. I still do have this but have got used to it.

‘Do you think I should push for DMTs? I’m hoping that the sec will call tomorrow having spoken to the neuro about an appointment. My nurse is back from leave on Tuesday. I’ve emailed her and she’s usually pretty good at replying quickly.

Just an update. I’ve got an appointment tomorrow so hopefully will get some answers then. Mindful of what Sue said, I’ll tell her about the 3 day episode of numb lower back, groin and lips last month. Plus the fact that the distance I can walk without my legs buzzing has reduced.

As I suspected from her letter, my neurologist confirmed that I now meet the amended criteria for relapsing remitting multiple sclerosis. She was very honest with me and said that she was shocked that neither the radiologist from my local hospital or neuro radiologist from larger local hospital had identified the spinal lesion until my latest MRI despite the fact that it can be appreciated on my previous scans.

I’ve now been asked to consider which disease modifying treatment I would like to opt for. I have a further appointment with the MS nurse on 28th January. It looks like it’s Tecfidera, Lemtrada or Ocrevus. Any opinions? I’m nervous about all of them looking at the side effects.

I’ve printed off the DVLA form, told car insurance (they said they didn’t need to know), travel insurance (already had me screened as ms because disclosed cis previously), life insurance (told I need to write with any lifestyle changes or medical conditions and they’ll note it on my policy). Is there anyone else I need to tell? Do I actually need to tell life insurance company? Could they refuse to continue my cover?

Sorry for all the questions btw :slightly_frowning_face:

Hi Smurf

Don’t worry about all the questions, that’s what some of us live for - ways to make our hard earned experience pay off for other people.

Have you looked at https://www.mstrust.org.uk/about-ms/ms-treatments/ms-decisions-aid There are details on the decision aid about the different drugs.

It’s a difficult decision, choosing a first DMD. And the ones you’ve been offered vary significantly.

I always thought I’d been cheated out of Lemtrada as it wasn’t in use when I was first diagnosed. I actually went to a lecture by Dr Coles about what was then called Campath in about 2002. It sounded amazing, but it took many years to become licensed for RRMS and actually offered to people. So there’s a bit of me that wishes I’d been a suitable candidate for it however, it’s a heavy duty drug (big gun) and has the potential for significant side effects. So think carefully and do plenty of research. You’ll find a lot of people on the https://shift.ms/ forum have taken it, so look on there. (There should be some posts on there about Ocrevus too - it’s quite new so there’s less anecdotal information about.) You could also look on here for posts by Katy79. She’s written plenty about her experience with Lemtrada.

Tecfidera is a different kettle of fish, being an oral therapy which is also lower down the flow chart of both effectiveness and side effects to both Lemtrada and Ocrevus. There was some evidence that Tecfidera works best when it’s the first DMD a person has taken. I’d point you to the right place for that evidence, but it seems to have vanished. It is a good drug and is possibly a reasonable first DMD to take, if you’re not having relapse after relapse. It still has side effects, some people have quite a bit of nausea. Quite a lot of people (me included) have to stop taking it due to depleted Lymphocytes. Lymphocytes are the white blood cells responsible for fighting off viruses. So if they are too low, you have to stop the drug and it can take a while to recover the lymphocytes. But that actually isn’t so bad I don’t think. Two different neurologists have now told me that the time it takes your lymphocytes to recover, you are still fairly safe from assaults on your myelin by the immune cells. Certainly if you take Tecfidera and decide it’s not for you, you can scale up to one of the other drugs. The problem might come if you did have lymphocyte depletion, you could find you’re then not a suitable candidate for Ocrevus as that has the potential to lower your neutrophils (the kind of white blood cells that fight infection).

I suggest you get family/friends to look at the drugs if you can and talk it over with them. Whatever drug you take will affect your nearest and dearest too, so it’s no bad thing to get them invested in the decision.

And it goes without saying that you can keep debating pros and cons on here.

Re your life insurance, I’m not sure. It sounds like you’ve started the ball rolling with DVLA. Not certain whether there’s anyone else who needs to know. It’s always worth seeing your GP to talk about the diagnosis. Make sure they are aware of your diagnosis and what future needs you might have. See how much they actually know about MS!

I’m glad you have now been given the definitive answer by the neurologist, that it is MS. Hopefully, you feel ok, maybe a bit less uncertain.

Sue

Thanks Sue. This won’t be my first DMT as was on Rebif from Feb to Dec 17 - had to come off due to low WBC. Will that make a difference to my choice do you think?

I sway between Tec and Lem. Tec I think lower side effects but lower efficacy. Then Lem higher side effects but also higher efficacy. My husband is trying to help me look into it all. Guess I need to wait to see what else my MS nurse sends but these are the options according to the decisions aid.

Does my age and medical history affect the choice?

Thanks. It does help to talk on here as saves driving my husband mad talking about it so much.

I think having had to come off a drug because of low WBC is actually very likely to make a difference.

The reason I think this is that although I was designated as having translated to secondary progressive a couple of years ago, I’ve just lately had two relapses and have two new ‘enhancing’ (ie due to active inflammation) lesions. So have been advised to go back on a DMD.

I saw a new and rather fabulous neurologist a couple of days ago and we went though my rather complicated history. I had been thinking the safe option for me was Copaxone, while the risky option, should it be available to me was Ocrevus. So I asked him whether ‘ having had low lymphocytes with Tecfidera, would I be more likely to have low neutrophils on Ocrevus?’ (It’s a potential side effect.) He said yes, once you’ve had low WBCs you could be more likely to have similar reactions.

Do you know which type of WBCs were depleted on Rebif? If it was neutrophils, I think you might find Ocrevus is unsuitable. You might even find that Tecfidera is also out. Unless the neurologist is happy to start you on Tecfidera and just keep regular monitoring of your blood. (The expectation with Tecfidera is that your lymphocytes are lowered initially, but that they should return to at least low normal levels.)

To be honest, I think you probably need more guidance than just, here’s some potentially scary drugs, pick one. Especially since you’ve already had one drug stopped for low WBCs.

So, with regard to my own history, I’m going to start Copaxone. It’s safe and while less effective, it shouldn’t affect WBCs or my liver (side effect from different drugs!!)

If you have an email address for the MS nurse, I’d be tempted to email him/her, bring your Rebif side effects to his/her attention and ask whether this affects your choices.

Theoretically, age shouldn’t make a difference. In practice it might do. Previous medical history certainly should be part of the decision making process.

I do hope I’ve not made a complicated issue even worse!!

Sue

Thanks Sue, I’ve been composing an email to my MS nurse so I’ll add my queries to it. Can’t remember which WBC was lowered on Rebif but it was concerning enough to take me off it. The neurologist won’t let me go back on the interferons again but didn’t say no to Tec. I’ll clarify though.