Here I am, starting another blog post with an apology! I’m sorry there has been no update for over 7 weeks. They have actually been quite tough weeks for me … I have been unable to work and have kept my circle very small, in order to cope (just close family and a few close friends).
Looking back, I now realise I have been going through a period of adjustment. My whole life was geared towards going to Russia for HSCT on 16th March and it has taken a while for me to come to terms with this being cancelled, at just a few day’s notice. Not knowing when, or if, I’ll eventually get there, is a difficult position to be in. I’ve had a deterioration in my walking over this time too, increased problems with my left leg, as well as increased joint and muscle pain. All this has been going on while we have all been living in very strange times indeed … no wonder it all became a bit too much.
I reported in my last post that I was soon to start two new treatments … one to hopefully improve fatigue levels and one to hopefully reduce MS disease activity.
I have had no side effects or issues at all with Amantadine and a slight improvement in fatigue levels, so will be continuing to take this daily.
I’ve had a slightly bumpy road beginning Tecfidera, with flushing, burning and rashes most days. Thankfully, this is reducing each as time goes and is now just about manageable.
I returned to work today and am pleased to report that everything went well. I’ve had great support from my head teacher and my team, who have kept in touch during my absence. I have a desk set up at home, with a lovely view and am looking forward to getting on with things.
I’m trying not to think too much about HSCT and whether it will ever feel safe to go ahead. I think it’s going to be quite a while until that decision can be made.
Hello dear readers, I’m sorry for neglecting you of late. Today is my 66th day in lockdown and as everything is on hold, there really isn’t much to report!
I’ve had lots of messages and questions from family and friends about how my MS is affecting me at the moment and my plans for treatment, so I thought I’d write a bit of an update.
Over the last few weeks, I have had telephone appointments with my GP, an occupational therapist, a physiotherapist, my neurologist in Salford and with the neurology team in Sheffield. My long awaited appointment with the MS Nurse has been delayed as she has been redeployed due to the pandemic.
The situation with Professor Sharrack in Sheffield is that he believe that I have Secondary Progressive MS with superimposed relapses. This would exclude me from their criteria for HSCT treatment there. They would like me to have a further MRI scan, which they will compare with the previous one, before making a final decision. At the moment, the hospital is not carrying out routine scans, so this is likely to be on hold for several weeks/months/who knows?!
My own neurologist is very concerned about the length of time I have been without treatment and would like me to try another DMT (Disease Modifying Therapy). He understands why I am pursuing HSCT but feels that it won’t be safe to travel for treatment for quite some time (a year or more was mentioned) and would like me to be protected from further relapses during this time. So I have agreed to try Tecfidera. This is taken in tablet form and reduces both the frequency and severity of relapses. My neurologist thinks I am having lots of mini relapses, so hopefully this drug will reduce them.
Regular blood tests are required when taking Tecfidera, including an initial test to check liver and kidney function, full blood count and diabetes status. So, last week I went to Salford Royal Hospital for the test. It was a very strange experience, having not left my local area for weeks and only occasionally driving around the block.
The hospital was eerily quiet and no one seemed to be wearing a mask, except me! I was asked some COVID questions and had my temperature taken on arrival (by a man not wearing a mask) and several vials of blood were quickly taken (by a nurse who was wearing a mask).
I have also been prescribed a drug that may help with my debilitating fatigue and brain fog and started it this week. It takes a few weeks to begin to take effect, so fingers crossed it works for me ??The drug is called Amantadine and is an antiviral which has been found to help 1 or 2 people in 5 with MS fatigue, although the mechanism for this is not known. It is sometimes used to treat people with Parkinson’s Disease as well.
I am still off work and my GP would like me to stay off until both new drugs have had a chance to kick in. I have very mixed views on this … some days I feel that I could manage work (at home of course) and on other days it feels like an impossibility. Being at home has given me lots of time to think and come to the realisation that I need to make some changes in the long term (whether I eventually have HSCT or not) …I have no idea yet, what those changes might be.
Alexandra Park, Edgeley
I have been continuing on my daily walk most days and some days this has been quite a struggle, as my left leg tends to drag and can often feel like a heavy, dead weight by the time I’ve walked a few hundred yards. A couple of weeks ago, I developed a severe muscular pain in the right side of my lower back. I spoke to my Occupational Therapist about this and after much discussion, she worked out what was causing this problem. Most of the time, I wear flat ankle boots when out and about, as I find these comfortable and benefit from the ankle support, especially on my left foot. When the warmer weather arrived, I started wearing flat lace up pumps and was aware that my left foot was dragging and would sometimes catch on the ground. The OT worked out that I was leaning slightly to the right in order to accommodate my dropping left foot and that this was the source of my back pain … how amazing is she?! So I have now been provided with a device to help lift my left foot, which should reduce tripping risk and take the pressure off my back.
It’s ugly and a little uncomfortable, but I’m going to persevere with it. If it keeps me mobile, who knows, I may grow to love it!
A combination of Tiger Balm, hot water bottle and gentle movement has healed my back pain, so I’m back on my feet again.
With my son’s dog Odin ?
I hope you are all staying as safe and well as you possibly can ?
