Wednesday 15 April 2015

33 days to go to Treatment

I've never even read a blog, let alone created one so please bear with me.

I'm going to keep adding to this with my thoughts, treatment, symptoms, test results and anything that seems relevant in the hope it's a useful tool for anyone considering Lemtrada as a treatment or receiving it. I hope that it's educational and can give others the help that Emma, Glenn and other MS bloggers have given to me

I'm Tracy, I'm 43 years young, married, no kids (unless you count Gareth who's happy to grow older but refuses to grow up) 2 cats and 2 dogs and a pretty fantastic life even though I have MS

I have Relapsing Remitting Multiple Sclerosis and in 33 days time I begin treatment with Lemtrada (also known as Campath-1H and alemtuzumab)

Campath has been used for many years as a treatment for Leukaemia and is administered at a 12 times higher dose than I will be receiving as a Lemtrada infusion. Its a chemotherapy drug and I'm going to be taking it as a first line of defence against Multiple Sclerosis.

The background ....

I can't tell you when MS started, but it was somewhere between 2010 and 2014, we got engaged on Valentines Day 2010 and I'm pretty sure everything was okay then. We spent the next year planning our wedding and I lost 5 1/2 stone in weight because there was no way in hell I was walking down the aisle in a wedding dress that could have doubled as a family size tent.

Looking back I can see the signs coming through 2013 when Mum was so ill, the exhaustion, losing sensation randomly every now and then, random acts of clumsiness when I thought I’d lifted and moved my foot and scraped it along the floor were all there but there were things I needed to do so I ignored them and just carried on.

The fatigue was something I put down to working long hours, commuting into London every day from Basingstoke and generally staying up too late and not sleeping enough.

Then on a Monday at the start of September last year, something went pop in my head and what felt like a chronic migraine was there in full force in a matter of 45 seconds. By Thursday I'd had enough nothing worked to lessen it (except wine). I saw my doctor and was told it needed to be monitored, if it got worse to come back. Friday I nearly passed out in the supermarket and called back and was told to go to the Hants Doc out of hours service at Basingstoke hospital and was immediately admitted. They thought I might be having a brain haemorrhage.

9 attempts at a lumbar puncture and a CT scan showed no bleeding but 'shadows' a few MRI's later and hey presto you have MS.

It was November before things got bad, the sensation loss in my left arm had become loss of all feeling in my skin, it had spread through the left side of the trunk of my body, my neck and face and my left butt cheek.

December I lost the feeling in both my legs with strange sensations in both my feet like walking on cotton wool

January I lost the lower half of the trunk of my body as well with none of the other area's of sensation loss returning or noticeably improving.

February foot drop started with vengeance in my left foot, now I'm actually tripping myself over with my own feet if I don't watch them when I walk most annoying.

March what I'm describing as spaghetti leg started again in my left leg. This is the worst so far as it's so random and unlike the foot drop which I can avoid the consequences of by paying attention to my feet when my left leg suddenly has the support of a piece of overcooked spaghetti I simply fall sideways (think the scene from only fools and horses where DelBoy goes to lean on the bar but the hatch is open) the only way to try to stop this is to use a walking stick effectively turning myself into a tripod ... leg falls stick saves me (allegedly)

So why Lemtrada ?

I'm naturally a fighter, I don't give up, I don't give in and a swift and effective brutal attack is always my preferred method of dealing with a problem. Lemtrada for me represents 2 years of MS sitting in a corner battered and bleeding crying for it's mummy and not nibbling at my central nervous system taking more and more from me each time.

I've been asked why would I have this as the first treatment. Some reasons are practical, there are side effects to other drugs which make them unsuitable for me. My MS is so aggressive that I'm relapsing frighteningly often and going from 1 relapse a month to every other month isn't enough not when it's taking my legs.

I saw my neurologist and went through the choices, Beta Inteferon, Tysibri or Tecfidera, all of which could slow down relapsing but reducing from 4 to 3 relapses a year wasn't enough, I'm relapsing almost every month and a 25% reduction of on-going damage to simply isn't an acceptable statistic for me.

So what am I doing in preparation for Lemtrada ?

I’m drinking loads of water in preparation – I’ve done diets before which require you to drink a lot of water, and it takes a few weeks to get used to the volume or you’re running back and forwards to the bathroom every 5 minutes and I wouldn’t want to be caught short during the infusion – mind you at 4 hours an infusion and the numbness affecting my ability to gauge if I’m going to need the bathroom before the claxon sounds in my head screaming ’GO NOW’ it’s probably a bit moot :-)

The other things below are things I have chosen to do myself not because anyone with a medical background has told me to do so.

I’m also scoffing down vitamins like crazy, lots of Vit D, Vit B ( Biotin 10,000ug a day) Magnesium and Calcium (helps with Vid D absorption) fish oils, generic 1 a day high multivitamins (taking 2) and an immune system booster supplement (again double dose).

I'm also having Oxygen Therapy in a decompression chamber, hyper oxygenating my red blood cells which makes them great at healing. I had my first session yesterday and was quite nervous, the mask smelled nasty and plastic, it's quite claustrophobic having it on your face and breathing oxygen is actually quite hard work but I came out feeling absolutely epic, energised and feeling much 'brighter in my head' if that makes sense.

The way I figure it, when all those nasty T cells are squished, everything else should be at peak health to take up the slack so anything I can do to promote healing and shore up my remaining defences in advance of the treatment can only be beneficial.

I’m nervous about it all, it’s a big thing to do, but not doing it and things getting worse scares me more. It’s only my left leg at the moment but if it starts happening more often or to both legs I’m going to be in a wheelchair sooner rather than later …. wholly unacceptable so my weapon of choice is Lemtrada

So here is my declaration to MS

You've got this far but you will get NO further. I've picked my weapon of choice and I might not be able to kill you but I can render you powerless for a very long time. You will get no more of me you nasty little MonSter


  1. Well done Tracy, it's like you to take the bull by the horns.
    Best wishes for your treatment, love Pat xx

  2. Hi I'm Amee, I've decided to read through your blog as I am set to begin Lemtrada in May. I'm nervous. I made the decision to switch from Tysabri after 9 relapse free years. I can't live with the side effects and I feel like every month I am closer and closer to getting PML. IF this doesn't work, I'll have no one to blame but myself but I have to do something. I feel like I am in someone else's life. Thank you, in advance, for your initiative and what I'm sure will be wise words!

    1. Good luck with the treatment, it has been amazing for me, I have my life back again and great hopes for the future xx


Far too long between updates (again)

 So what have I been up to in my long absence and how have I been ? Well the Crohn's is under control and back to how it's always be...