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Recent diagnosis and a few questions about treatment

Hello,

My story so far… the ‘highlights’ for want of a better word.

I posted on here approx 18 months ago having just returned from a Doctors appointment, where I was told the weird electrical buzzing I felt everytime I flexed my neck, actually had a name… My original post on here- which I cant find now- was written during a panicky Google session where it dawned on me I might have MS.

An MRI on my cervical spine came back normal and I forgot about it… until nine months later I had a bout of suspected optic neuritis and decided to utilise my private health cover with work. Cue second MRI on brain and C-Spine with evoked potential testing, again - all came back completely normal. I was patched off by my neuro and told to come back if I got any more symptoms.

The symptoms did come back - L’hermittes only - and I have now arrived where I am now, newly diagnosed (RRMS) and awaiting my referral back into the NHS system to see the MS team.

My most recent MRI shows three brain lesions, one which enhanced (C-Spine still clear) but I am feeling ok :slight_smile: I am very lucky that currently my symptoms are very mild, they really cause me no issues at all.

However my Neuro has said my MS is ‘highly active’… He said that because I have had 3 relapses in one year (that I should consider starting treatment immediately, and that I might qualify for one of the newer drugs (Tysabri in particular)

I’ve done alot of reading and spoken to a couple of people I know with RRMS - one of whom is on Tysabri and has been for 8 years, and one who has been on Betaferon for 12 years. Both doing great with little progression over that course.

I cant quite get my head around the idea that I am currently feeling totally fine, and could continue to do so, but I am faced with a decision about whether to start treatment that could have side affects and / or risks… I have read that early treatment is recommended and comes with a better chance of being less affected further down the road… Perhaps my ‘wait and see’ approach is a little naive.

I realise no one will have answers to the above, just wanted to ponder to an audience who will understand where I am coming from

x

Hi

I understand completely, how difficult it is to make a decision on taking a dmd. You read the info and if you are anything like me, I intend to focus and the side effects and that makes me worry if I am making the right choice. I wish I could be a more positive person! To be brief, I had Transverse Myelitis March 2012, as I had two areas of inflammation in my spinal cord and lesions found on my brain, I was told at the same time probably MS, officially DX RRMS June 2014.

Neurologist recommended starting dmd asap, as Tecfidera, was still waiting for approval, I decided on Rebif, I took Rebif for nearly a year, 3 injections a week, didn’t feel good on it, very tired, sleeplessness, skin changes, injection site reactions. Had more mri’s neurologist recommended escalation of treatment. I decided on Tecfidera, as the stats are impressive. Been on Tecfidera week 8, first few days were tough, bad flushing, nausea and vomiting, but now doing great, I am pleased I didn’t give up.

With any treatment you need to weigh up the benefit v risk. The purpose of a DMD is too keep you as well as you are for as long as possible, and of course delay disease progression. You neurologist and MS Nurse will help you make a decision, but ultimately the decision is yours. I am pleased I opted for a dmd, as MS is so unpredictable. when I started on Rebif I thought that would be that, know I am more realistic and think if it doesn’t work out I will try something new.

Wishing you all the best for the future, do what you think is right for you.

Sarah x

Hi Sarah,

thanks for your reply, I think I’ll play it ‘safe’ and get on one of the injectables and see how I fair, I’ve been reading abut Tecfidera too and have thought that would be one I’d leek quite comfortable with. Tysabri scares me a little, mainly because it is so new but then you hear such great things.

Just want my MS clinic referral to come through so I can make a plan! Ah well, I’ve got 8 weeks to get myself prepared

thanks for your help :slight_smile:

x

I was diagnosed 10 years ago and didn’t qualify for DMD’s at the time. Now 10 yrs later MS symptoms are raising their heads and with the new guidelines I’m also looking for which route to follow. My appointment is on 08/09 so I am reading everything I can in preparation for my appointment. Good luck with your decision . Sharon x

There’s such a lot on your plate at the moment - I really feel for you.

It requires a heck of a mental effort to get one’s head around MS - particularly when there seems to be (as there does in your case) a major disconnect between how you are feeling and how your neurologist thinks your MS is behaving. That is really, really hard.

My 15 years with MS have been spent trying (not always with success) to stay on terms with disease that has been aggressive from the start (more obviously so, in my case). I was 10 years on Avonex (all that was available at the time) and , after a few rather bad years and lasting damage, I have been stable on Tysabri for 4 years or so. Had Tysabri had been available back on 2000, and had my neurologist felt that was what I needed, would I have gone for it from the start? Probably yes, but I would have wrestled with the dilemma you are wrestling with. If I had known then what I know now about MS and what a brutal enemy it is, would I have gone for Tysabri at the first opportunity? Absolutely!

The trouble is, MS can be causing mayhem in your central nervous system without it being obvious to you as system user, so to speak. It is true that levels of disability are sometimes poorly positively correlated with MS lesion load, observed on MRI or whatever. But, as I understand it, lesion load gives a pretty good indicator of how active the disease is and has been. Even if one has been lucky so far with where those lesions happen to be (i.e. your CNS has found workarounds, so you have hardly noticed), there is a limited amount of room in there, and the spare capacity for workarounds gets more limited and one needs more and more luck to evade real trouble as the number of lesions and the level of CNS damage increases.

Prevention is definitely better than cure when it comes to MS damage - not least because there isn’t a cure! But prevention - at least in part - is possible, and in your shoes I would be going for the strongest drug that meets your case as your neurologist sees things.

I am so sorry that you are faced with such a wrenching shock about your health and difficult decisions to make. Good luck with it all.

Alison