February 2016 was an horrific month for me. I lost my beloved mother on the 21st and then on the 24th I went to see my neurologist and he gave me the news I had been waiting to hear for so long, you have Primary Progressive MS. Too late to tell my mum what was wrong with me, even though we thought it was MS.
My neurologist and I had been together 10 years. My neurologist had always felt there was something like MS going on but was unable to give me a firm diagnoses as there was a protocol to go through called the McDonald Criteria.
I kept missing it by one point then on that day finally the last piece of the jigsaw had come together and he was able to give me a life changing diagnosis.
A label. I was numb anyway couldn’t feel much because I was grieving for my mother still in shock over her horrific passing. I almost hugged my neurologist because of my emotional state. Basically his parting words were to me, your strong Mrs Trim, if you need anything talk to your MS nurse, and keep your doctor in the loop. So far I have never seen him again.
MS Nurse. Ah the invisible helper. You can if your lucky get hold of the elusive MS nurse who sadly is so overworked they are rarer then hens teeth. We are blessed with two I believe for a large area a big city who has to cope with so many people. You ring them if your feel anxious about something. Firstly you have to be assigned one. I had been apparently; but typically I was lost in the system.
I felt deserted by the NHS. I was told my life is officially changed, you have a progressive disease go forth and deal with it. I felt like someone had plonked me on a desert island and i was just sat there watching my life fly by. It took a full year to finally be assigned an MS nurse it was my new doctor who pushed for it. I saw my MS nurse just before my husband died in October 2017.
Well that was an experience. Off I went on my appointment. Basically to be told very little. I had been coping with eye issues really bad. The MS nurse decided to check my eyes by using a colour screen chart they use for colour blindness. Now that was a hoot as he was colour blind himself, so my care worker at the time had to keep him informed of what the colour was. I did mention this before in one of my other blogs. They use these to see if you can see the number.
I gather that I failed the test and he told me that for the last few months my symptoms would indicate another attack of Optical Neuritis which had been totally missed by the GP. The only thing you can do for this is steroids but it was too late for me so I had to expect about a year of on and off symptoms, which well yes I actually did get lucky me.
Who knew a diagnosis of Primary Progressive Multiple Sclerosis would leave you feeling alone and frightened. I kind of knew what Robinson Crusoe had felt being stranded on an island waiting for help and it never ever seeming to arrive. Yes that was fiction mine is reality which makes it all the worse.
Finally another occasion to see the MS Nurse in 2018 I was told that an appointment would be scheduled for me to see my neurologist in March 2019 to discuss the new drug for PPMS sufferers.
Ocrevus (ocrelizumab) could be my saviour, help me to slow down the progression, so obviously it was HOPE for me. Maybe finally I could get off this island and join the human race again. I waited for notice of a pending appointment nothing.
Then I read on a forum for MS sufferers the news………….
The NHS will not fund treatment with Roche’s recently-approved multiple sclerosis drug Ocrevus, even though it is the only treatment for the primary progressive form of the disease.
The final appraisal document from the National Institute for Health and Care Excellence (NICE) has caused consternation among patients – and an immediate petition from the MS Society – for Roche, NHS England and NICE to reach an agreement that will allow the drug to be covered for PPMS.
It was down to MONEY again. It cost too much, never mind the cost of human suffering. We were to be denied a possible drug that could make our journey easier. Money we were not worthy of such a sacrifice. It made me so mad.
I believe that is why so far no appointment for the neurologist as he knows there is really nothing he can do for me.
So what now for me and hundreds of other sufferers of Primary Progressive MS. Do we just sit drifting along for years whiling away our days hoping for help to arrive? I feel like the lost. Its all down to money the price of life. Its available if its PAID for but costs thousands of pounds. It is thankfully available for people suffering with RRMS if they are in the early stages.
I know the chances of being accepted for this drug were pretty remote as it’s designed more for early stage PPMS but someone out there may have been a great candidate for it and benefit from this drug.
In the meantime I have done all I can to help myself. I have read everything I can about my illness whats good what is not, tried to stay positive.
Primary Progressive MS is really pretty much unknown about. Its one of those ADD on branches of a disease. Therefore not so much research done about it. I know more people now being diagnosed with it, so perhaps it is time the powers that be start to deal with it more. You cant just dump people on top of a scrap heap without at least trying to help them. 10 – 15,000 people in the UK are now being diagnosed with this disease. So basically 1 in 8 people will be waiting to be diagnosed.
Yes I feel deserted lost and alone. Thank goodness for friends and family is all I can say.
I know there is more research going on and hopefully in a few years people newly diagnosed will be helped more. Thankfully this disease can be slow to progress and even you can have a period of feeling better. Like it goes into idle mode.
I used to call this this stage the eye of the storm. I would say to my hubby the eye of the storm is here and I am smack bang in the middle as my illness has suddenly gone all calm, my legs have no spasms even, like for a few minutes a little longer if I am lucky all is calm at sea and I can see the light through the doom and gloom of my illness.
Then BLAM……….. havoc. Suddenly the disease will come out of its idle stage and goes nuts for a few days like it has to catch up on all the pain it has not given me.
Stupid disease, sometimes I would rather it just get on with it. I know silly to say but you just don’t know where you are with it. I haven’t had a truly calm moment for several years now, just more or less at the same level so I suppose in a way that is good.
After my husband died I did go down hill fast but in the last six months thankfully I feel with positivity and less stress I am on an even keel.
Right I am off; my island is calling me, I shall while away my days in quiet contemplation of life, and chill out listening to music and wait, and wait and who knows maybe one day a brown envelope with my name may come plopping on the mat and it will be from my neurologist to finally ask to see me………….
Who knows maybe there will be a letter today……
UPDATE. 19th July 2019. Finally the letter came and I saw my neurologist on Tuesday 16th July after THREE YEARS. It was a good appointment. He was very welcoming and sad to hear about my husband. Anyway he offered me a chance of Ocrevus but said it was a long road to find if i actually would be able to go on it, and yes my age was against me. I have all the stuff to read about it, but feel its too late for me, and I am not comfortable with the side effects, and the warning that if there is breast cancer in the family the chances of it are made much higher if i start this meds. It also stirs up your autoimmune system and leaves you more open to stuff like, flu, herpes, hepatitis, shingles the list is quite vast.
I am not sure that I want to take all these risks. I live in sheltered and a lot of people get sick in the winter here a lot of them being elderly so I am more open to catching something.
I have decided though if you want support you wont necessarily get it from the NHS. You need to join forums, start a blog, if you have MS join the Society and go for meetings (a bit like joining the AA lol), join on line groups and hope too your family will support you through this life changing disease. BUT remember that everyone has their own stuff to deal with and may not have time to help. Find a hobby, if your younger then get out with friends and have a life. MS is not going anywhere, so we might as well get on with our life as best we can.
GOOD NEWS.
https://www.mstrust.org.uk/news/good-news-nice-approves-ocrevus-ocrelizumab-primary-progressive-ms
So finally NICE have approved this medication for PPMS. I dont think I will be able to get it as my EDSS score is 7 not sure how long i have had it, but great news for those PPMSers who have just been diagnosed or recently diagnosed as its a start. A start a hope to get better. I am so relieved for all my friends with this disease.
Thanks to Caz who runs a fabulous web site for Chronic Illness
https://invisiblyme.com/
Its very informative.
My Journey with MS 