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rrms or secondry ms

I was diagnosed over 5yrs ago with rrms. And in past 18 months, My symptoms have got worse. Even so I asked ms nurse if I had secondry ms. I had bad relapse last year and was unable to walk at all for 7 weeks. Since then I have to walk with aid of crutches. I virtually have no balance or coordination.And I take what I call turns. Where my speech goes slurred. I have no power in legs and arms almost like I am paralysed or have taken a stroke. The turns always seem to last 3 hours but afterwards I walk as if I am drunk. Staggering and banging in to things. Nuero said its not relapses as they only last 3hrs. I also have various other symptoms. Some days pains in my leg are unbearable with shooting pains. Or stiff feeling. Not sure if stiff feeling is because I cant walk length of myself and is lack of exercise. I also take dead arms. And some days cant hold cup. Also suffer from extreme fatigue. And have had to go down to part time hours. Now my latest symptom Is constant feeling of being on a lift/boat and makes me feel sick. There is not a day goes by that I have not had any symptoms. I am starting to record everything and have noted since october I have had 2 good days where I have had no symptoms. I am starting to feel like hypocondriact. I am also confused as I thought rrms you made recovery from relapses and didnt have to live with symptoms every day. Does anyone else have any similar symptoms. And does this sound as tho I have secondry ms.

Hi Violet,

RRMS does mean you have recovery from relapses - but not necessarily to how you were before. That is one of the complete myths about it!

Many people with RRMS - I’d guess most, but cannot prove it - have symptoms on a daily basis.

I know I do, and I am supposedly doing really well - can still walk three miles, on a good day, and haven’t had a relapse in literally years.

I still feel shitty most days, and accept that isn’t going to improve. However, I’ve no reason to believe I’m secondary progressive, and my neuro has never suggested that’s the case.

Remission doesn’t mean: “no symptoms”. Most people with MS have some evidence of not being well, most of the time. Those who don’t are very lucky. Not being “fine” doesn’t mean you have SPMS. Most of us aren’t “fine”.

I always have pain, always have stiffness (despite six baclofen a day), always fatigue, always poor balance, often numb hands on waking - the list goes on. This is when I’m not relapsing, and haven’t for yonks.

Tina

Hi,

I was advised that it is quite common to initially be diagnosed with RRMS, and that this stage could typically last 10 years, before the condition develops into SPMS (Secondary Progressive MS). During RRMS, a person would experience a relapse (how severe the effect & how long the relapse lasts would vary markedly from person to person). It was always felt that a person would make about an 85% recovery after an attack, but the remaining 15% would be a permanent downturn.

Although it’s quite possible to continue having relapses when you’ve progressed to SPMS, I’d say your Neuro needs to investigate.

It would be worth making an appointment to see them a.s.a.p. to discuss your concerns, and get a medical professional’s thoughts and advice.

Best of luck!

Dom

Thanks for your replies I still find it very confusing after 5 years. But I think that is to do with having virtually no symptoms for first cpl of days. Its also very worrying as I can not walk at all without holding on to walls etc

Hi Violet,

one thing I would say to you is that SP is just another label that doesn’t mean very much. I’ve been SP (supposedly) for about 4 years. I am getting worse, there is no doubt about that but I just take each day as it comes. I see the neuro every 6 months, we have a nice little chat and I go home again!

A neuro may be able to help with some of your symptoms though and it’s always worth a try. I think most people with MS feel a bit hypochondria challenged at times. For my own part I try to focus on solutions not symptoms. If I can’t do something my goal is to find a way that I can, I try to ignore much of what is happening to me because there are no treatments so it’s not worth the worry.

Jane

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jane (wendels) you are one of my heros!

you put a positive spin on it all although i know you must hate it.

violet - if it is spms that will mean you probably won’t have access to dmd’s.

​if you currently have a dmd and are happy with it, you may not want to push for an upgrade (?) to spms.

carole x

I have never fully recovered from relapses or had a day free of symptoms, but despite that my progression has been very slow over 30 years since first syptoms. I was told that I was SPMS 7 years ago, but as Wendels above has said…it’s just another label. I was happy to give up DMD drugs 7 years ago, as they werent working and I struggled with side effects anyway. I am currently having a bad relapse for the first time in over 7 years despite the SPMS label. For anyone who has been told they are SPMS, just make sure you are taken seriously if you have an actual relapse, as my neurologist was initially reluctant to give me steroids as she said they were unlikely to work on someone with SPMS. She soon changed her mind when she actually saw me, and could see the evidence and rapid onset of the relapse for herself though. The steroids have had an effect already. There is no set course for MS, and everyone is different. Try not to compare yourself too much to other people or to look for any kind of certainty. Eventually you will think much less often about it, and just get on with enjoying life as best you can, and going with the flow. Take care and good luck. X

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I think you are exactly right Kara. We all end up hung up on labels and really they can be meaningless. I’ve had MS for 18 years and it’s always been labelled as RR although I have quite severe disability due to progression. I recently asked my neurologist whether I am still RR (prior to starting Tecfidera) and he says “essentially” it is still RRMS. It’s one of the problems of MS - that we may have some symptoms in common and some aspects in common, ultimately we are all individual and labels applied to us are not always helpful.

Sue

Thanks for replies. I still find it very confusing. Knowing what’s relapse etc. Just finding things hard as its starting to rule my life, I virtually have no balance. Cant go out on my own even with crutches as have no confidence. Hold on to walls etc in the house and had few bad falls past few weeks x

My neuro, one of the top MS doctors in this country, said to me that ‘Secondary Progressive’ and ‘Relapsing Remitting’ are not helpful labels. I would agree - neither of them describes what has happened to a person or tells you what will happen to someone. What is the point of them?