Thursday, 16 September 2010

Relapse or No Relapse??

When and how do you know when you are having a relapse??
I have always had an issue with this. I have symptoms every day and yes sometimes it can be really obvious when you are having a relapse. One of my first relapses in 2003, I lost my mobility. I couldn't move my legs properly and from that time onwards I have had to use crutches. I am also using a wheelchair, at times, now too (with much reluctance!).
That relapse was very clear to me, but I have had plenty since then that I am unsure whether you would call them a relapse or not.
I had one in June that I was sure at the time was a relapse. I had increased pain & fatigue. I started getting really heightened spasms and had to start on Baclofen. It was at this point where my constipation was very bad and I had to start on the Peristeen system (see my Peristeen post).
I had an MRI shortly after this started and when I got the results at the beginning of September, I was told that no new lesions had shown up. This of course is good news, but it made me question whether I was making all my symptoms up?
At the end of August, I have started having more increased symptoms, which I am now sure is a relapse (it is still ongoing). It's just a shame I can't have another MRI scan as I feel sure something would show up!
This time I started off with a weak bladder. I felt the need to be going to toilet a lot more frequently than normal. This started at the beginning of a week. On the Friday of that week, I had really bad pain in my eyes. The eye sockets were painful, it felt as though they were bruised. Also when I moved my eyes, I felt pain and quite sick. It also gave me a really bad headache. This continued over the weekend and then on the Sunday, I started getting a really bad spasm pain in my right hand. I found it really hard to use my right hand for anything because of the spasms, and the pain I experienced in that hand was quite unbearable.
It then proceeded to affect the whole of my right side. I had a shower and when Martin washed my back, you could have split it in half. The right side was numb but painfully so, where as the left side was the normal altered sensation for me.
I have since been feeling worse. My right leg feels like I am lifting around a ton weight. I am really fatigued and experiencing heightened pain...................again!!
Another thing I know is that I have been really busy lately! I have been doing a lot of singing which, of course, is something I love, but has that contributed to how I am feeling?
And have you noticed how the Doctors leave all the decisions to us? I know that we have to have the right to choose but sometimes, I just want someone to tell me what to do!!
I do find it really hard though because I am still questioning whether I am actually having a relapse??
Does anyone else have this problem?

I hope everyone is well and not suffering too badly with the change of seasons. I am going on holiday in four weeks so I am really looking forward to that. And how important is it to have things to look forward to?
We are going on a Canal boat holiday again, as we did last year. It's a different time of the year this time though and we are going on a different canal. This year we are going up to Chester and on to Ellesmere Port - starting from Audlem.

I had a decision to make as to whether to take my wheelchair with me. I have decided to take it, because I don't want to have any reason as to why I can't do anything!! We are going to explore Chester city, go to Chester Zoo, go to the Blue Planet aquarium and go to the Boat museum at Ellesmere Port - I am really excited!! The distance of the canal and the number of locks are fewer than we covered on the Llangollen canal last year, so we know it will be a nice relaxed time!
Can you tell that I am REALLY looking forward to it!!

I will write another post very soon, because I am going through an application process to have our bathroom converted into a wet room. It has being ongoing for a few months already but the application has been sent off now. I have someone coming tomorrow to do a statement of needs/costs, so that the grant can be looked at and then they will look at our finances.
I will write a separate post about all this as it is quite a complicated process!!

Sending best wishes to all MSer's out there, I hope you are all keeping well!

PS, I must just wish my Dad a very Happy 70th Birthday for tomorrow - I love you Daddy! XxXxX


  1. i dont have relapses amelia, because i dont get any remit.ive always got those symptoms.eye sounds nike optical neuritis,not for bladder etc,well,im sorry,but thats pretty much the norm.ask my girlfriend.least when we go out we both know every bloody public loo on the route lol.stop worrying about lesions love,mean nothing.its a fact that some people can have an mri that shows many lesions,and have little or no effects.others can have just 2 or 3,and be completely paralised.MS affects every single sufferer differently.take care mort x

    1. I have never had a relapse, my MS is always the same, and,balance issues, memory problems, losing things.

  2. Hi Mort,
    Thanks for your comments, they make a lot of sense to me! I have symptoms all the time and yet I am told that I have RRMS. This always confuses me because I feel as though I should have relapses and yet how do you know, when your symptoms are always about? Hugs X

  3. well,in the early days of MS diagnosis,they usually call it rrms,as you may be having a relapse,but if you have symptoms,albeit different ones,ALL the time it may well be now that its second progressive.its just a label amelia.MS is a nasty disease,it changes the goal posts just when you think you can handle it. remember,MS society is there to help.use their website,talk to others on there.we help each other amelia,relapse.remit,whatever,you must learn to adjust.and i dont mean that to sound glib.i have had to as well.its not easy love.dont get hung up over how many lesions have,it means may have something so simple as a cold coming,but my god,if you do the MS will flare me at some links i will send you,useful sites that may help.and stop worrying,the chances of it turning REALLY nasty,primary,are small.1 in 4 end up in a wheelchair.well,ok,but that means 3 in 4 positive.and see your MS nurse,she should be your first point of contact.mine is now retiring so i am at a loss at the moment,because we are unlikely to get another.i counsel for the MS society online sometimes,newly diagnosed. it does help to talk to someone who has it if you are worried.i am always here if you need a chat. tc love mort xx

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  5. Great blog. I'm only 4 months diagnosed, with no known symptoms until a week before "diagnosis". I thought I was relapsing last month as my symptoms became worse but my Neuro told me that was just part and parcel of MS. It's all very confusing, as the support workers through the MS society can't commit to speaking about the medical stuff/ what to expect etc. I have recently started my own if you want to have a look.

  6. Thank you for your post. I have only been diagnosed for 9 months and used to get scared to death when any new "sensation" hit me. I did go to my neuro once thinking I was surely in a relapse. He sent me on my way and seemed very unconcerned. The last 4 days I have been battling vertigo, extreme fatigue, numbness in my hips and upper thighs, which has made it very difficult to walk, burning skin and increased muscle spasms, to the point that I am in a lot of pain. The Baclofen was helping with the spasms but now don't even seem to take the edge off.
    I haven't gone to see my neuro or even called because I don't want to be brushed off again and I do not want him to think I am just being overly sensitive to symptoms and rushing in every time something feels different.