MRIs (How regular?) and changing NHS trust?

[Laura_02]

Hello

A couple of questions really. I am currently changing DMT to Tecfidera however I really don’t want to start it. My reactions to my last treatment (Avonex) where awful and as silly as it sounds it’s really frightening me!! Since not being on any treatment I haven’t felt like I have MS I’ve been fine and enjoying life with my two young children. I’ve only ever had one relapse that I’m aware of (like a Bell’s Palsy) this led to an MRI and diagnosis. My consultant just looked at the scan said I had clinicallly isolated MS and then changed his mind (when I said I’d been biting my tongue) and just went oh yeah you’ve got relapsing remitting MS, phoned his nurse and his words were ‘weve Got another one’ I have found him so slap dash and I also don’t feel I can approach the nurses either, I feel like they always fob me off and pushed me into trying Tecfidera which really will not suit my lifestyle at all!!

I was diagnosed during pregnancy (MRI scan done before I fell pregnant) and my little girl is now 6 months old, I’ve only suffered symptoms whilst on Avonex, I haven’t had a relapse since she was born.

I would really like another MRI scan to see if my MS is active before making treatment choices!

my questions are…am I being stupid not treating this now? Would another MRI scan help me in making a treatment decision? I’m so confused and feel the DMTs are so so harsh and I currently feel great not even suffering fatigue which I suffered with so bad when on Avonex!

Can I request to change trusts that I’m under in the hope of better treatment options/MRI scan? I can pay for a private MRI but need a referral and someone who can read it but my consultant has told me he doesn’t believe having repeat MRIs is helpful!!

sorry it’s a rambly one, I’m not in a great place with this!

Thanks

Laura

[Ssssue]

Hello Laura

A whole bunch of questions. All I (or any of us) can do is answer you with our experience, thoughts and feelings. So none of this is factual or scientific in any way.

My first DMD was Avonex. I had horrible cognitive side effects with it. My brain simply didn’t work for the day after the injection and it took 4 months to explain it to the neurologist (my clinic appointments were always on the day following the jab!) I was lucky in that I had a brilliant neurologist who eventually explained that occasionally, beta interferon can exacerbate existing symptoms (and I felt really nervous then as I didn’t know I had any cognitive symptoms!)

But as that was in 2002, there were only the beta interferons or Copaxone to choose from for a next DMD. So I went on Copaxone. And that was honestly a dream. For 5 years, I had no relapses, no symptoms, and best of all, no side effects form the drug.

Then I started to relapse even though I was on Copaxone, so stopped it. Unfortunately, even though more DMDs gradually became available, I had bad side effects from Tysabri (hepatitis caused by the drug), and Tecfidera (lowered lymphocytes that just kept dropping instead of recovering as they are supposed to do). So haven’t been able to be on any DMD for long enough to protect me from relapses.

I don’t necessarily think another MRI is relevant to the decision as to whether to take a DMD. Unless you are really doubting your diagnosis. If you are clearly diagnosed with MS of the relapsing remitting variety, then trying to take a DMD is sensible, even if you’re not relapsing now. I say this in spite of my history of abysmal luck with side effects, because while I was not on a DMD in 2012, I had a horrendous relapse, it put me in hospital, then a rehab unit for 2 months. I’ve not walked properly since then. I’ve also got badly functioning bladder, bowel, brain and hands.

I’m 22 years into my MS journey, am aged 52 and now have the label of progressive relapsing MS.

The point of all this is that another MRI might show up lesions that haven’t produced any overt symptoms or relapses. Or it might not. But if you have RRMS, the ‘big one’ can strike when you’re not looking irrespective of scans.

I totally understand your choice not to take Tecfidera. It’s a good DMD for many people, but if you can’t see it fitting into your life, then you really don’t have to take it.

In your shoes, I’d ask for Copaxone. So long as you rotate injection sites (ie rotate around your fattest muscles - I tended to aim for my bum and thighs - arms hurt as I was too skinny, wish I had that problem now!), it generally produces little in the way of side effects. It’s not the most effective DMD, at an average of a 30% relapse reduction rate. But balancing side effects against efficacy, at least it’s being on a DMD with little change to your life.

You can of course try to change hospitals, and thus neurologist, but you still might not get another MRI. Although you might get a neurologist with a bit more in the way of interpersonal skills! Try talking to your MS nurse (assuming you have one, and that s/he’s someone you can be honest with).

Best of luck.

Sue