This is my first time posting so please bear with me. I have had Realpsing and Remiting MS for around 22 years (I am nearly 54 now), but it wasnt formally diagnosed until around 12 years ago. Every time I had a relapse by the time I got anywhere near a consultant it had remitted and the view was that I might not have another attack, which i invariably did. The pattern of relapses was a significant one around every 18 months or so and the pattern for the relapses was that the symptoms would come on over a week, last around 2-3 weeks and then remit over a week, although the remission was never a complete recovery and there was always some symptoms that stayed. The relapses involved a range of symproms with weakness/numbeness in a combination of limbs, general fatigue and one where I woke up one morning with double vision, all in all the condition was under a degree of control with the odd periods off work but generally managable, that is up until around 2 years ago.
I have had 7 major relapses, affecting arms and legs in different combinations. I have had a variety of steroids, tablets and injection and sometimes they have helped, but latterly they havent had any impact at all. The last relapse was in Augusr 2013 and this one was a biggie, but somewhat different from previous “typical” attacks (if there is such a thing as a typical relapse?). The relapse was underpinned by an overwhelming sense of fatigue and those of you who have experienced such fatigue will know that sleep doesnt help and you try to get as much sleep as possible and wake up feeling even more tired than when you went to bed! I had general weakness in arms and legs including a noticeable deterioration in balance, along with a whole host of overlayed symptoms including issues with bladder control, some incontinence issues, very dry eyes (which as my job is on the computer is a real issue for me), some issues with swallowing/throat and difficulties with memory and multi tasking which made work even more difficult.
The MS team and my GP were very suportive and told me that it could take up to 3 months for this relapse to remit and that the only treatment was complete rest. I suppose that I am a typical bloke whose attitude to illness is to work it off, but I had to come to terms with the fact that this relapse would jump up and bite me every time I tried to push things too far. I had started the 3 weekly injection of Rebiff, but not in time to avoid the August relapse and I was also prescribed Amantadine to help with the fatigue. This is a strange one and it didnt address the underlying fatigue, what it did was to keep me awake turning me into a sort of zombie, fatigued but awake!
In December I had hooked up with the Occ Health at work and I had started a phased return to work with a whole host of reasonable adjustments to try to help. My plan was to get through to Christmas and take a couple of weeks annual leave to re charge the batteries. Well that was the plan but those of you who have experienced this overwhelming fatigue will know that no amount of sleep helps with the fatigue and my attempts to help cooking the Christmas Lunch served to wipe me out for the rest of the day. I was back in work full time in January but not really doing what I would regard as a proper job, the fatigue was still there and the dry eyes and memory issues were very debilitating. I lasted until the end of January and Occ Health said that I needed more time off work. This tied in with my appointment with my Neurologist whose assessment was that the issues I had from August were down to a significant relapse but which hadnt remitted. I asked whether this signified a move to Secondary progressive but she felt that it was too early to diagnose that, but what was clear was that there had been no remission and there had been a significant increase in my overall disability level.
Since the session with the Neurologist I feel that my condition has continued to deteriorate and I now have constant pain in the base of the neck/top of the spine and this has now extended into both shoulders, with any movement of the neck sending out sharp pains. This pain is a first and is something I have not experienced in any previous relapses and as I keep telling everyone this doesnt feel like a relapse, it feels different with symptoms/issues just layering on top of each other. I am scheduled to see Occ Health and my MS nurse next week and I have a host of referrals that are being set up coverring speech therapy and incontinence but I think that I am getting to a crunch decision point, that being can I sustain work or is this the time for a big decision around ill health retirement. That certainly wasnt in my life plan and to even consider not working is in itself worrying let alone all the hoops that I would need to go through to sort out early and unreduced payments of pensions, but the facts are starting to become clear, I am not going to get any better and the probability is that things will get worse given the degenerative nature of MS, and as things stand I am struggling to do the work that is contained within my job description! It all feels like a scarey rollercoaster has started and I am not sure of the twists and turns ahead, other than they will be bumpy.
I suppose the reassuring thing in reading the posts in this forum and what motivated me to finally post myself is that I am not alone in what I am going through.