GP – Another MS Warrior

129 What’s happening with my MS?

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.

You can read more about Tecfidera here … MS Trust – Tecfidera

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.

you can read more about Amantadine here … MS Trust – Amantadine

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.

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.

I hope you are all staying as safe and well as you possibly can ?

122 Two weeks!

It’s just over two weeks until I fly to Russia and I’m feeling every emotion going! I’m scared, excited and slightly panicked, but mostly positive and optimistic. There seems to be a lot to do at this late stage …stuff to buy for the journey, stuff for being in hospital for a month and more stuff for when I get home. I’m in almost daily communication with the clinic and finalising visas, transfers, contract and payment …it’s all go! And it’s all stressful!

I went back to work on Monday after the half term break, but my head was all over the place and I struggled to keep focussed. I care about the work that I do (supporting children in care to achieve in education) and it concerns me a lot when I’m not able to do it to the best of my ability. I saw my GP on Wednesday and she advised me to stay off work for the time being. It feels strange to not be in work but I think it’s the right thing to do.

It was strange talking to my GP about my final plans for treatment. Obviously I have been talking to her about HSCT for a long time and she has been very supportive and encouraging, making the referral to Sheffield and discussing my options at every stage. Officially, she can’t fully support my decision to go to Russia and I sensed I have put her in quite a difficult position. She has seen my decline over the last couple of years and understands my decision to take action.

My GP’s main worry is my safety on the journey home. At this time I will be recovering from a pretty gruelling treatment and will have a suppressed immune system. I know my family are very worried about this too. I have done everything I can think of to minimise the risk …

For the first time ever, I will be flying business class on the journey home, with a stop off in Frankfurt (in the business lounge!) on the way. I’ll be very careful about what I eat and drink. I plan to wear a mask, wipe down with disinfectant wipes everything I will have contact with, to wash and disinfect my hands often and to keep them away from my face. My GP suggested keeping as far away from other people as I can. Many others have done this journey before me and I’m confident I will be just fine.

In the current era of the Corona Virus, there is much discussion everywhere, about hygiene and infection prevention. I saw something on TV the other day about hygiene when travelling. Apparently the dirtiest item you will touch when flying (in terms of bacteria and viruses) is this …

I suppose everyone puts their personal items in there, including shoes, bags, coats they have just taken off, contents of their pockets etc …and I don’t suppose they are ever cleaned! I’ll be thinking carefully about how I put my things in the tray and will use hand sanitising gel straight after.

Airport Security Trays Carry More Cold Germs Than Toilets, Study Finds

Yesterday I had my nails done for the final time before I go. I decided to go for it with the colour …

My lovely friend, Katy from Seed Beauty always does a good job with my nails and although she may not know it, has been a brilliant support over the last few months. She will be devising a facial / bald head massage once I am well enough when I’m home!

Arrangements for our tea party on 7th March are well in hand and we are all looking forward to it. If you are coming and haven’t yet paid, please get in touch with one of us. I’m looking forward to seeing lots of friends on the day. I want to send a big thank you to everyone who has helped in a host of different ways, to make this happen …I am forever grateful.

GoFundMe

PayPal pool

37 Some ramblings about weight gain

I saw my GP today to talk about various things – MS, treatment options, hypothyroidism (I have that as well) etc. She decided to check my weight and blood pressure while I was there.

Obviously, I’m very aware that I have gained weight over the last few years. Lots of things have contributed to this …my age is one (honestly once you hit 50, anything more than the odd nibble of celery causes weight gain).

Anyway, my weigh in revealed that I am now the heaviest I have ever been (including when 9 months pregnant!).

I feel that MS is a major cause of my weight gain. A few years ago I was several stone lighter, at the gym two or three times a week and generally pretty energetic. My favourite class was Body Pump – a high energy full body work out using weights.

Ok, I didn’t quite look like this, but you get the picture!

I felt great, strong, confident …I’d love to be able to do it again.

As my MS has affected me more and more, I have become less and less active. I wish now, that I’d pushed myself to do more – perhaps not body pump – but not to have given in to it so much. The symptoms of MS make exercising so difficult and of course, once you lose fitness, you become weaker and weaker, energy levels drop and it’s so hard to get motivated again.

I have been reading a lot about the benefits of exercise to those with MS, in terms of relieving symptoms and to maintain strength in order to cope with those symptoms. Somehow I need to find a way to get back into exercise.

Recently, Niamh, Sophie and I have been going to an Aquafit class at my local pool – great fun and more of a work out than you might think! For me, being in water feels amazing. I have always loved swimming and been confident in the water and have now found it is the only place where I don’t have the constant feeling that I’m about to fall over!

I am working on some exercises at home to improve my balance and have been referred to a scheme at my local gym where I will be allocated a trainer for 3 months. They will help me to plan an exercise programme, help me to access appropriate classes and hopefully gently get me back into moving a bit more.

My weight gain is not just due to lack of activity – know I’ve been comfort eating for a while now – I need to find a way to get on top of that too.

As you all know, I am hoping to have HSCT next year. The treatment is challenging to the body, so I want to get myself in the best shape I can, as I feel this will improve my chances of coping with treatment and having a smooth recovery.

On a positive note, my blood pressure is “perfect”!

1 How did I get here?

My journey to diagnosis is a slightly unusual one. Most of those with MS are diagnosed in their twenties or thirties, so I don’t fit the most common profile. I am also informed (by my neurologist) that my MS presentation is unusual. Because of this, my early symptoms were attributed to my age, the menopause or my existing thyroid condition and it took 7 years to reach a diagnosis. One GP even suggested my symptoms were “all in your head”! During that time, I had several brain and spine MRI scans and eventually a lumbar puncture. To date I have 3 large spinal cord lesions and numerous white spots in my brain and my recent brain MRI scan showed ongoing disease activity. My neurologist has gone from “don’t worry, go and get on with your life, you may not have any further relapses” to “I think you’ll have another relapse and I think it will be soon”. All a bit scary! But it’s not all bad news … One of the positives about being diagnosed with a life changing illness is that it forces you to reevaluate your life and to work out what is important and what isn’t. Some of the minor day to day niggles of life now seem irrelevant. I am blessed with my wonderful children, fantastic family, fabulous friends, amazing work colleagues and a job I love. I know I am lucky.