@Rambles

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Rambles

Symptoms

Hi All, A few months ago I got hospitalised for weeks after lots of symptoms including eventually not being able to get around or use my hand. I was diagnosed with RRMS and recently started Tecfedira. I am a lot better generally from these symptoms but sometimes get new symptoms like numbness in various places and pain in my eyes. I have been told when following these up that this is'normal' and that they don't need any treatment and are not an attack. But it is all new to me and I don't know if I shouldn't be doing something or just accepting all these things as 'not a relapse'. I am really struggling with how to deal with everything - I would really welcome any suggestions.

Stumbler

@Stumbler

Hi @rambles and welcome. MS is a condition where relapses can damage parts of your Central Nervous System (CNS), which the brain then attempts to repair. Unfortunately, these repairs may not be 100%, leaving some residual damage. It's this residual damage which can cause "annoying" symptoms which stay with us. We tend to use a phrase, "listen to your body", to help manage our MS. Basically, this means that if our existing symptoms play up, then this is a warning that something is going on that our MS doesn't like. And, it's in our best interests to listen to this warning, e.g. rest if we're tired. Now, if we start noticing new symptoms, that we haven't experienced before, then we should contact our MS Nurse to let them know.

Rambles

@Rambles

Hi Nutshell and Stumbles. Thank you Nutshell for your experience. I am glad you have not had a major attack for a long time. Stumbler - I have been really low since all this happened but trying to manage everything and it is all new. I thought messing Ms were ones I should tell my Ms team about so I did but they don't think I should get any treatment for them - my eyes and the new numbness. I got told it might be due to changes which will show up on my next MRI. I am not coping well. I am scared all the time and feel very isolated. I can't work or drive and feel cut off from my old life.

Stumbler

@Stumbler

@rambles , this is all still very new to you. Just be patient with yourself, as it does take time to work out how to manage yourself for the best. Being given a diagnosis sets us off on an intense learning curve to understand what it's all about. You may still be recovering from your initial relapse which lead to your diagnosis. Were you treated with intravenous steroids (methylprednisolone) whilst in hospital? These may have helped expedite your recovery, but your body needs to be allowed to recover. This needs you to switch off and relax as much as you can. Having the correct mental state is also important. Now, I'm not suggesting that you're losing your marbles, but you may be preoccupied with worrying about what's going on and what this means for the future. This is a natural reaction, but, it is what it is. Worrying and stressing does not help resolve anything. In fact, there's a possibility that we could spend all our lives worrying about things that may never happen!!! In fact, the majority of us here subscribe to the notion that stress is one of the major negative influences on MS. It allows the brain to release chemicals, which can go onto to negatively impact our CNS. The exact same target as our MS! Once recovered from a relapse, there may well be residual symptoms which may become part of our new normal. But, they do matter to us and there are medications available to help us manage them. You may feel that you are not coping. The fact is that you haven't been told how to cope. Be patient and let things settle down, then you'll be able to see the wood for the trees. There is life after a diagnosis of MS. It may not be exactly the life that we planned, but there is a worthwhile life to be enjoyed. So, stick with us, let us know your fears and ask us your questions. We'll do our best to help you get your life going again. :wink:

Vixen

@Vixen

Hi @rambles. A lot of what you said resonates with me. I got diagnosed this year and take Tecfidera too. So I've been on this journey for about a year altogether, but am no closer to understanding this condition! I don't yet know the absolute difference between a relapse, permanent symptoms, new symptoms, what is normal, or anything! But, I have accepted that I have this thing and have made lots of adjustments to my life. I never overdo things to try and prove a point, I am eating well, and have become good at making goals and plans in the shorter term. Not because I am writing off my future, but because it's easier to focus on something specific. I'm hoping that with the fullness of time, I will begin to understand, possibly anticipate, and recognise the trigger of new symptoms or sensations. Over everything else, the most important thing is to understand the impact of stress on people like us, which is much more marked than with your average person. I'm not a stressful person, but I recognise that I create a little anxiety without realising it because worrying can really suck you in. For example, in the past few months I planned two trips. Lo and behold, in the days before, up came some niggly sensations - I was like - OMG, here comes another relapse, I'm going to be ill. But on both occasions, it was most likely my preoccupation which was causing a reaction in my body. Both trips went ahead, no problems. This site is amazing for information and reassurance, so use and enjoy!

Rambles

@Rambles

@stumbler - thank you for your reply which was really helpful. You put your finger on where things are 'at' for me at the moment. I did have IV steroids in hospital and after that had weeks recovering from all the symptoms that had got me there. A lot of things are much better and hopefully improve a bit more. What came out as'messing' in my last post was meant to be 'new symptoms' (sorry!) and they are what have got me confused and stressed as I was told by MS nurse they are not something to worry about since (I think this is how they explained it ) they are not there all the time. Your advice about resting and relaxing makes perfect sense - I have been extremely anxious. I was also this way - but to a lesser extent - before I ended up in hospital so I do need to get a handle on it - just how I learn is the question☺. @vixen - You sound as if you have made a lot of progress in a year in learning how to manage both your symptoms and your own state of mind and day to day life.I hope I can get to that place. It hasn't been very long since I got out of hospital so I suppose I am still a bit in shock, plus overwhelmed by where to begin with things as they are now. Managing symptoms, mood, rest and at least some activity ...it is all so much to deal with. @nutshell - I am glad you are doing well and enjoying yourself. It helps to hear all of you say you felt maybe a bit like I do now at the 'beinning' but are now coping better. It gives me hope that I can do it too. Sorry for delayed post but I sometimes get locked out of the site for some reason so can't read or post anything. Wishing you all a good Sunday☺! -- Rambles

Stumbler

@Stumbler

@rambles , you should read this site regarding your MS. It does provide a good definition of what a relapse is :- https://www.mssociety.org.uk/what-is-ms/types-of-ms/relapsing-remitting-rrms This should allow you to differentiate between things to worry about or not. By the way, if you experienced a "403 Forbidden Error", that has been an annoying problem, which defies explanation. There are plans ahead in the not too distant future, which may resolve this. :wink:

Rambles

@Rambles

Thank you @stumbler - it is a good link, very informative. Think it will take me a while to get my head round all this, or even a part of it but your advice to be patient and relax made me stop and think - haven't been able to do either in ages since all this started. Was never very good at either but worse than ever with all that has happened. Yes, I keep getting '403 Forbidden' messages when I try to get on the site. No idea what this means as have no computing knowledge at all but had thought it might be just my computer. I can relax about that then☺

cameron

@cameron

@rambles, when I was at your stage I was suicidal. Roll on thirteen years and I am fine. Limping, yes, on anti-depressants, yes, but I am living a great life. What got me my life back? 1) great medical support 2) DMDs 3) psychological intervention 4) lots AND LOTS of exercise and neuro-physio. xxKay

Rambles

@Rambles

Glad your life is so much better @cameron. Thank you for sharing. I'm in awe of all you are doing. What kind of exercise do you find especially good?

cameron

@cameron

I have a weekly one-to-one physio session in water (hydrotherapy) and also have to do two (very short) sequences of physio exercises daily. I've been told that there's a risk of losing function if I stop them. I have membership of a health club, which has a good pool and three water classes a week (aqua zumba, aqua yoga and aqua aerobics), plus the option of personal training. I alternate what I do - I've just finished a course of 16 personal training sessions and am now back to just swimming, but my physio reckons I need to do at least one water class a week now I've stopped the PT so need to get going on that one. I aim for 2-3 hours aerobic exercise a week. Not as easy as it was because my previous club was ten minutes drive from home. After that closed last year, my only option for a decent swim is my current club, which is a 35-minute drive. However, with its many classes on offer plus a good restaurant and spa, it's better overall. The MS has closed down the activities I loved - fell walking, Scottish dancing, tennis, squash and the only accessible things now are swimming, yoga/pilates and the gym, but I got bored with that, so mainly stick to anything water-based. There is no doubt AT ALL that exercise is my key to keeping stable and the fear of losing what function I have is enough to keep me motivated.

cameron

@cameron

@vixen - I so identify with your puzzlement with symptoms. It reminded me of my first appt with the neuro a couple of months after diagnosis. I had followed the advice of the MS nurses to the letter, was feeling a load better and was rather looking forward to telling the neuro how things had improved. In the clinic waiting room, the nurse called my name. I got up to follow her to the neuro's room and as I did so, my bad leg which had been behaving itself perfectly went into spasm. I limped heavily into the consulting room and told the neuro how cross I was that my gait had changed within the space of less than a minute. He just smiled. Happens all the time, he said......

Rambles

@Rambles

Thank you all so much for your posts which are really helpful and which I think might just have calmed me down a bit! A miracle as I have been so worried and stressed day and night. @cameron I do understand - I have always been an exercise freak and now find I am unable to do many of the activities I love. I would love to do more than I am right now but I haven' t been great the past few days and I also need to get some sort of routine going. You sound like you are really on top of things and managing well. I have found the water to be really good right now - exercising in it or swimming. I have just done a little - you sound really active. Hopefully I can get there!