Hi, it’s been a long time since I posted anything and a LOT has changed. I met and married my husband, became mother to his son, bought a house, lost my dad, lost my job, began the menopause, covid happened to us all, and now I have been told I have SPMS.
I was first dx with RRMS in 2008 but probably have had it since at least 2006. I have been on DMT’s since 2009 Betaferon then Fingolimod since 2013 but during the last 3 years I have noticed a steady decline with no relapses. Due to Covid I had not had a face to face meeting with my neuro or MS nurse for about 3 years and 2 years respectively and had felt a bit abandonded by the NHS in that time apart from regular MRI and blood appointments.
Last week was my first appointment with my neuro and I think she was a little shocked by my appearance. I have lost a lot of weight unintentially due to swallowing difficulties, bowel issues causing loss of appetite. My walking has deteriorated and my speech and cognitive function has suffered. MRI’s show no signs of relapse and steady decline indicates SPMS as I had suspected. I don’t know if this is called a rediagnosis but thats what I’m seeing it as.
Although I suspected it myself, it still hit me when she said it out loud.
She said that I am now in the ‘progressive phase’ of the disease and I kind of wanted to ask ’ How long does this phase last? And what comes after this?’
One half of me knows she would not have an answer to those questions. And the other half of me was scared in case she did and that I didn’t like the answer.
The thing is I feel like I did when I was newly diagnosed in 2008. I’m frightened for myself and I’m frightened for my family. We bought a new house last summer and the long term plan is to build an extension and I keep thinking I cannot make long term plans now, I have to live in the here and now. If we were to build now I would struggle with the upheaval but in a year or 2 I might not be able to cope with it at all. My husband doesn’t understand how I’m feeling. But I cannot feel excited by something I might not even be able to enjoy.
I feel like I’m rambling on but this is what the inside of my mind feels like right now.
The plan is to switch from Fingolimod to Siponimod depending on blood and ECG results and then just take each day as it comes because that is as far as I feel able to plan at the moment. Life is on pause again while my conscious mind tries to make any sense of what the future might be.
I’m scared. A few years ago I tried to take my own life and I don’t want to be in that dark place again.

Hi Mel, I know your worry love. I’ve had PPMS for 25 years. It began when I was 45. I’ll be 70 on Saturday. I’ve been at 8.5 on that wotsit scale for most of that time.

I have carers twice a day and can do very little for myself.

My husband of 50 years doesnt always get it either!

I’ve never had any DMDs as there werent any for PPMS and it’s too late for Ocrevus for me now.

Most years I coped really well, but last year I didnt. I just felt what was the future going to be like? How would cope? I cried and had a melt down.

But then something amazing happened! Jesus spoke to me. He made me see I was here for a reason and very valuable.

I began going to church, got baptised and yeh, I can see the way through. Jesus will help you too, if you ask him.

lots of love Boudsxxx

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Prof G does a great MS Selfie article on SPMS and the others, effectively there is only one MS. Great read. Google or some such should find it easy enough.

Hello MelC, I am sorry you are really struggling at the moment and scared and worried about the future.

I was told I probably had MS in spring 1986 but had very little trouble with it until about 2002 - 2005 when it began to make itself known. I eventually had more tests done and was told I was SPMS. It is now 17 years later. Yesterday I signed up, after a lot of thought, to Siponomid. This will be the first drug I have taken for MS, other than Gabapentin for nerve pain. DMDs weren’t around in 1986.

I can still walk, albeit with a stick or rollator outside, still drive a modified, hands only controls, car, still work fulltime and am in my mid 60s.

Don’t panic, don’t despair. Once you have adjusted to the new circumstances, I am sure you will find you can start thinking ahead again.

Fingers crossed that we both get on with Siponomid.


(and I too have a faith to which I turn when I am feeling down)