Last reply 3 years ago
RRMS or SPMS?……unsure and anxious!

I woke up 21st July 2013 (first day of the six week school holiday) with a numb hip, buttock and thigh, which progressed to my whole left leg within a week. |t is like walking on a foot and leg that you have sat on for hours, feels ten times the size it is and on a bad day can only walk a short distance before I can’t lift it. I then started getting sever banding and shooting pains in the waist on my left side as well as a ‘bag of bugs’ sensation under the skin.

I had an MRI which showed an intrinsic inflammatory lesion around T8 and a single lesion in the brain and was diagnosed with Transverse Myelitis but then a numb patch occurred under my left foot and my right arm and face felt weak and slightly numb so had a lumbar puncture which showed CSF oligoclonal bands and so was diagnosed with RRMS in September 2014 and have now been on Tecfindera since February. My consultant said that as so much time has passed since my first full leg symptom, I will not now recover from that.

The thing is, the more I am on this site the more confused I am in that, I have had no ‘relapses’ (and not sure that that means in reality) and have everything and more than that very first day. I have not had any recovery whatsoever!

Is this not then SPMS?

I really don’t want to be taking medication if I should not be on it as Tecfidera is only for RRMS I believe.

As for Lemtrada, I’ve never been told about this and have only learnt of it’s existence on this site.

Thanks for reading.

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3 years ago

@melaniemann , you really should keep a symptom diary, so that you can record all this activity. Then you can recall it accurately when you see your Neuro.

The question of RRMS or SPMS may be answered by these definitions :-

But, if you have had no further defined relapses, then, the Tecfidera must be working for you.

SPMS is the start of a slippery downward slope. Ne medication and we try not to slide too quickly. No relapses, but we can get gradually worse.

Personally, I would take this as an extended period of remission. These can last for a number of years. So, just keep doing what you’re doing. 😉

3 years ago

Your DMT may well be doing its job and protecting you from further relapses.

3 years ago

To have a relapse though, don’t you have to have a remission? I’ve not had one yet just more things added. My Neuro consultant said it would be about 6 months before the Tecfidera has any effect.

3 years ago

I was similar in that my major symptom (a severely impaired leg) which occurred during my first and most severe relapse never recovered. Instant fixed disability! Alongside this, I get come-and-go sensory stuff. It’s always been classed as RRMS and the three relapses I’ve had in 11 years have been very minor, with one of them being argued about as a ‘possible’ relapse. But like you, there’s never been a moment when I’m not acutely aware of having MS in my body. I started feeling less nervous about all this after the first few annual reviews, when I would try and describe the daily stuff going on. The neuro’s usual answer was ‘look at what you’re doing. Measure the MS by how you can function’. On this basis I can say that not only have the MS effects not worsened, in many ways I can live life better. This is down to ongoing physio, regular aerobic exercise and better self-regulation of stress/general care of the body. It’s been a surprise to discover how much you can influence MS effects through adopting the right regime. xxx

3 years ago

Hi @melaniemann, sorry to hear that this is making you so worried. Sadly there’s no quick and easy answer to many of these questions in ms as the difference between RRMS and SPMS and between a relapse and not a relapse isn’t as black and white as we’d hope and often takes time. And sadly, remission is not the same as recovery. It refers more to the underlying damage being done to the nerves- sometimes this has no observable effects (silent relapse) and sometimes it does but the physical (and emotional) impact of the damage can last considerably longer than the relapse itself. The fact that you have had no noticeable relapses is a really good sign, and may mean that the tecfidera is doing its thing. I’d agree with @stumbler (as usual 🙂 ) and keep a symptom diary to show your consultant but do try and give yourself a break from the worry as this will make all your symptoms feel worse. Easier said than done I know! Big hugs xx

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