Forum

Chronic relapsing MS?

I have just been cc’d a letter from a consultant and it says I have chronic relapsing MS. I was just wondering if this is any different than RRMS? Also just thought I would add that at the bottom it says the letter was dictated over a month before it was typed…shocked to say the least!

Hi Babylove… no wonder shocked… both by the amount of time it took to get the letter out… but also the dx.

It is the same as RRMS but means that you are having many relapses and symptoms.

I don’t suppose it is news to you to know that it is chronic, but I’m sure a big shock to see it in words.

Hope you’re doing ok hon.

Pat x

i was under the impression that all forms of ms are chronic so wonder why your consultant felt the need to put that word on?

Thanks for the replies. I knew MS is a chronic illness but havent heard it used in this way before. Not that my neuro would know whats going on with me as I feel like I have been abandoned. Was in hospital for a week at the start of jan with ON and my neuro was meant to come to see me. He didn’t and I was sent home to get,a,brain mri as outpatient. This was done a couple of weeks later and I have since learnt that there is new areas of demylination (not at optic nerve) but my neuro has not seen this report as it was not him who ordered the scan. My next app with him is november. Just feel like im on my own.

Contact the Neuro’s secretary - 'cos things have changed since the November appointment was set up.

Contact the MS Nurse - same reason (plus you can lay it on a bit), they can short-cut the appointment system.

Contact your GP and see what they suggest.

“Chronic RRMS” sounds like another way of saying “Agressive RRMS”. And that means that “RRMS” on its own does not give an accurate description of anyone’s condition. Different Neuros - different ways of describing the same thing.

Geoff

Hiya

I really wouldn’t worry too much about it. You know yourself what your MS is like, the fact that they like to stick an extra label on it, doesn’t actually change anything.

When I was first diagnosed I had 5 relapses in 6 months (after being told at diagnosis to go home and get on with life as I may not relapse again for 5 years!). When I was referred to an MS specialist neuro he said that I needed to start DMD’s as I had Very Aggressive Relapsing Remitting MS. This was the first time I’d heard this phrase and it hit me like a ton on bricks! My mum noticed that I was obviously upset after the appointment and asked me what was wrong. I said that I was upset by what he said and didn’t know how to deal with it. She said (being the wise woman that she is) that if I thought about it, it was pretty abvious that it was aggressive as otherwise I wouldn’t be relapsing so often, did hearing that make any difference to anything…only that I would be put on DMD’s sooner, which is a good thing really.

Sue

x

Thanks everyone. Not overly worried about it apart from maybe needing to change meds. I will give my nurse a ring next week and see what she says. My neuro may look at my mri report and think nothing of it, thats what is stopping me from making a private app with him. The only thing is that last summer I have him a list of new symptoms. He read it, did a quick neuro exam and then told me it was “my mood” making things worse and that I had not had any disease progression. He also went onto say that when he read my list he was worried as it looked like either a progressive form of MS were there is no treatment or that my MS is now agressive and that would mean starting tysabri. After him saying that and making me cry for 3 days after, I would just like to find out that I was right and maybe get onto a DMD that might work. Thanks again

Hi,

Well your neuro sounds lovely-not.

you know it’s his job to look after you,but he could’nt even be bothered to come and see when you were in hospital.

Is your ms nurse ok, if so make an appointment to see her and explain to her what you’ve told us.

I know that labels dont really change how you feel in yourself but a bit of compassion would’nt go amiss

You’ve still got all of us to talk to.

Take care.

Lisa.x