Wednesday, 29 April 2015

18 Days to Lemtrada - So I'm off to Portugal

18 days left ..... EEEEK where did those weeks go ?


I feel like there's so much more that I should have done in the run up to the treatment. The butterflies in my stomach seem to be getting more active every day, but I'm excited too, I just want to be in control of the MonSter rather than it being in control of me.


So as part of my preparation it's only right that I ensure I'm not Vitamin D deficient so my butterflies are coming to Portugal with my husband and I so I can get some sunshine, a bit of a tan (well weak tea colour then peel and go back to my natural state of pale and spiteful) - I have a feeling my suitcase might come under some scrutiny as it travels with the vast quantities of vitamins and minerals that will be in there ..... it's going to sound like a rattlesnake with the shakes as it's moved around :-)


We have a wonderful villa with a solar heated pool, Jacuzzi, pool table and beautiful views of the Portuguese countryside which is far too big for the two of us, but hey we don't have to clean it


It gives me 8 days to recover from the holiday before treatment but I think the rest, sunshine and quality time with the other half will do more for me physically and emotionally on the run up to treatment than all the vitamins and Oxygen Treatments in the world - we so need a break from reality even if it's only a week.


MS update - I have recurring 'spaghetti leg' every few days but I've learnt to notice when it starts happening so I've not tipped over and used my face to break my fall recently. The numbness in my body is no worse than usual and electro shock hand is the same. The brain fog, physical weakness, limb fatigue and aching all much improved while I'm feeling the benefits of Oxygen Therapy. I've now worked out each treatment lasts well for 4 days but day 5 they all come back, so I'm doing treatments 5 days apart so that on day 5 I can assess if there's any overall reduction before the next treatment.


Feeling really positive, I'm going to Portugal WOOOHOOOOOO

Monday, 27 April 2015

Pre treatment holiday WOOHOO

DOGS SORTED !!!!

Found a wonderful lady who boards dogs at home, tomorrow night we book our holiday for a week and we fly out Saturday .........

If I pick up anything I will have 10 days to get right before treatment and lovely free vitamin D in the sunshine. We so need this !!!!

So excited I couldn't wait to post xxx

Post weekend update

Friday was physiotherapy day with a lovely lady who I have to say has a curiously evil streak. In my not so knackered state I'm a bit of a rarity in that all but one of the Pilates exercises were  ones I was familiar and comfortable with. There were some 'sensitisation' tests which involved me being 'touched' with objects and materials. Some of the tests were ones I could work out what I was being touched with the others were just weird :-O I completely failed the can you pick up paperclips from a tub full of marbles test with my left hand but passed it with my right - to be expected really. I did a 3.2k ride on the vertical bike which I enjoyed but tired quickly on and 10 minutes on the rotational balance machine which showed the profound weakness in my left leg - again not a surprise.


I got the call on Saturday morning to say there was a spare seat in the 11:45 Decompression Chamber for my 2nd Oxygen therapy of the week. Rather glad that Friday night had been a quiet one and that I was up and not hungover. The Saturday crowd in the tank are all very familiar with each other, the conversation was flowing and I finally got to meet the man who had HSCT treatment a few weeks ago. He's doing really well and reported happily that his pubes are growing back :-) (as I said VERY familiar with each other in that tank :-)..)


I've felt great all weekend, the random falling asleep everywhere was much reduced and I've had really good energy levels and a clear head which has followed through to this morning, with the sun shining am my spirits on a high.


We have had a bit of a holiday FAIL in that we have a couple of places we are interested in booking with James Villa's one in Portugal and the other in Spain .... unfortunately leaving Saturday now looks like it won't be an option as it's a bank holiday weekend and we can't actually get the dogs into Kennels as they're fully booked :-( Plan B is to shift the holiday by a few days but it would mean flying closer to my treatment date which I'm not entirely comfortable with, or rent an RV, throw the dogs in it for a week and go down to the south coast with them and just bimble around.


Decisions decisions, I'm sure it will all work out in the end

Friday, 24 April 2015

Great news for people with progressive MS - Pass the Biotin please

We have to say Merci to those nice people at MedDay, today they are releasing the MD-1003 Phase III trial results for the 'Super-Biotin' treatment


http://multiplesclerosisnewstoday.com/2015/04/23/phase-iii-study-experimental-ms-therapy-meets-primary-endpoint-results-presented-ann-meeting/


MD1003 may have two beneficial effects: 1) increasing myelin, the fatty nerve-insulating substance that is destroyed in MS and 2) increasing energy to nerve cells so that they can communicate more effectively. Researchers previously studied the drug in what is called “a proof of concept” study. A total of 23 people with primary and secondary progressive MS received the drug in that initial trial, and 90% of subjects showed some clinical improvement over time. Results for that study appeared in the Journal of Multiple Sclerosis and Related Disorders.
News that Myelin can potentially recover is great, the loss of the 'translation matrix' between our nerves and brain results in the most bizarre and debilitating sensory and neuropathic pain. Just being able to 'feel' things or feel things normally would make a massive difference to many MSers lives. To not have constant pain and discomfort is something we aspire to and this may be a step in the right direction.

So how much do you need?
It could be a long time before it actually gets approved for patients in countries around the world, so in the interim do we all ramp up our consumption of Biotin ? In Europe Biotin is available readily in high dose form, in the UK if you're a Costco member you can get 250 x 5,000ug but you need to munch down on somewhere between 18 and 30 of them a day to get close to the volumes of biotin provided by the trial.


What does it do for us?


Biotin is sold as a supplement for Healthy shiny strong Hair and Nails and anti aging, so if nothing else happens at all, you'll have lovely nails, a long shiny coat like a spaniel and just might find a cure for baldness and like Benjamin Button we will turn back the years and look 21 again :-)


The best news is this appears to be effective for people with progressive MS, goodness knows those with progressive must be thoroughly fed up of the many treatments released in recent years which are only for those with Relapsing Remitting MS ...... how very unfair, us RRMSers get some respite, but for a person with progressive it goes on and on without end ..... cross your fingers guys and gals,  perhaps not for much longer


If your Myelin can recover and that translation layer can begin to function more normally then perhaps this can offer a relief from the Neuropathic pain and sensory disturbance that Myelin depletion causes, if it can hold back the tide stop things getting worse then that's great news.


Why should we believe?
Because if we don't have hope, then what hope is there for us at all ? If we don't grab that hope at every opportunity, shout it from the rooftops, inspire and support each other and keep encouraging the likes of Med-day and others to keep trying because WE believe they can keep finding ways to beat back, stop or kill the MonSter.
After all if we don't believe why should they ?



Wednesday, 22 April 2015

You seriously have to try the gas chamber if you have MS

I know I'm starting to sound like a broken record, but I've had my Oxygen Therapy treatment today and if really is having an absolutely amazing effect on me. My head is clear again (well as it ever gets I suppose), the heavy limbs has gone, the all over ache that made me feel beaten up also gone. I know it will only last a few days, but that's okay my next appointment is already in the book.

26 days to go now until Lemtrada starts, and if I can keep the oxygen treatments and everything else going I think if it started with me feeling like I do today then I think it will go really well.

Feeling very positive right now .... Probably all the air in me 😀😀

Tuesday, 21 April 2015

Addicted to the gas chamber ?

It's been 5 days since my last 'gassing' and the fog in my head is still holding back but by heck does the rest of me know what hit it ..... big men with baseball bats. The fatigue is back in full force bringing with it the almost narcoleptic ability to simply fall asleep anywhere and at any time. Everything hurts as if I've done some extremely intense exercise - playing Rugby springs to mind (I remember the bumps and physical exertion and all over bruised feeling of that from when I was a child)


I'm sure this is just how I've felt naturally for a long time thanks to MS but it's quite a shock to look it directly in the eye and recognise it for what it is when it arrives in full force rather than the slow stealthy sneaking up on you unawares. I need to ration my energy correctly, this is a learning process, and with 26 days to go to Lemtrada I need to learn quickly and then adapt post treatment.


On a bright note Gareth has had annual leave approved for early May (I'm still waiting for mine to be approved) I would like to get a week away somewhere warm and just chill out before treatment starts, not entirely sure where we would go, perhaps somewhere in Europe rather than the USA or Asia where jetlag would probably do more harm than good.


More oxygen tomorrow 33ft this time, looking forward to feeling great again :-)



Sunday, 19 April 2015

Sunburn, gardening and BBQ

 I have been full of energy since starting the oxygen therapy and with the sunshine blazing it seemed like a great day to get loads done, needless to say today I feel like someone beat me repeatedly with a baseball bat everything hurts ..... Even bits I didn't abuse in some way hurt - I really need to learn how to ration my energy

We had some ornamental stones which were down the sides of the patio in our back garden that our young dog has been playing catch with and trying to eat. We needed to be collect them up and transfer them to the front garden before Winston ended up at the vets with a small rockery being removed from his insides.

To make things easier, I sat down and handful by handful popped them into an empty planter and then let Gareth carry the heavy containers back and forth to the front. He also regularly brought me squash as the sitting thing was clearly hard work. By the time I was done, my backside had gone to sleep, my legs weren't too bad, my arms had turned into silly string and I had to rock myself backwards and forwards like an upside down insect to actually get up off the floor.

Gareth was in charge of mowing the lawn which proved to be a little harder than expected as Winston decided the lawn mower was evil and clearly a threat to life as we know it and he had to vanquish it at all costs by biting at the lawn mower and throwing himself at it. Not wanting that vet bill either I walked both dogs to the park for a chasing balls and run. in hindsight I should have sat down with a cup of coffee.

Football was next up, our nearest local team (well half decent one) Reading v Arsenal in the FA Cup semi final at Wembley, we hadn't been able to get tickets but it was on the television - score points on
 energy saving by watching from the sofa, unfortunately up against a Permier league team with a lot more money and a few players in their squad who individually cost more than our own team in total, Reading lost in extra time gutted, but they certainly didn't disgrace themselves in the process to well done URZ

Evening came and the BBQ was dusted off for the first outing of the year .... As usual it took a couple of attempts to actually get it going properly. I had prepared stuffed pork tenderloin, halloumi wrapped in bacon, some sausages and fancy bread with caramelised pineapple and chocolate and Malibu sauce to dunk it in - i started all that at 8am so that it was done in case I was short of energy later  so I am counting that as energy planning win for me

I read for a while after the BBQ but then like the narcoleptic I tend to be these days I slid down on the sofa, used Winstons hip as a pillow and drifted off to sleep ..... Dogs are really quite comfortable as pillows and our two are quite happy to have snuggles.  I know I woke up at 03:00 and decided to go sleep in the bed, Gareth was still saving the world as part of part of the Counterstike Global Offensive online 'thing' .... Big kids shoot stuff with a keyboard and mouse.

It's Gareth's birthday today, I was torn between telling him to get up so I can give him his presents and have a nice breakfast with him or letting him have a lie in because it's his birthday ..... Patience isn't one of my finer qualities so I took him a double espresso took him for lunch and now settles back on the sofa hoping that Newcastle United (my team) beat Tottenham Hotspur (his team) this afternoon.

I think I might just stay here for the rest of the day, snuggle my man and see how much of my Easter egg I can get through because I don't have the energy for much more.

28 days to go :-)

Friday, 17 April 2015

Helpful ways of explaining MS symptoms

This makes me smile to read, but it does give an idea to non MSers what all this MS stuff can feel like and how to replicate it


What living with MS feels like..:-
When We say we can’t do something because we don’t feel well, put yourself in our shoes by using the examples of our symptoms below…
Painful Heavy Legs: Apply Tightly 20 LB ankle weights and 15 LB thigh weights then take a 1 mile walk, clean the house, go shopping and then sit down – how ya’ feeling now?
– Painful Feet: Put equal or unequal amounts of small pebbles in each shoe then take a walk, if we are mad at you we would prefer needles to pebbles.
– Loss of Feeling in Hands and/or Arms: Put on extra thick gloves and a heavy coat then try and pick up a pencil, if successful stab yourself in the arm.
– Loss of Feeling in Feet and/or Legs: Ask a doc for a shot of novocaine in both of your legs and then try and stand up and walk without looking like the town drunk. Hopefully you won’t fall down.
– TN (Trigeminal Neuralgia): Take an ice pick and jam it into your ear or cheek whenever the wind blows on it, or a stray hair touches it. If you want something easier to do, get someone to punch you in the jaw preferably daily.
– Uncontrollable Itching: Glue or sew small steel wool pads to the inside of your shirt, pants and undergarments wear them for an entire day.
– Tingling: Stick your finger in an electrical socket – preferably wet.
– Tight Banded Feeling: Put 12 inch wide belt around you and make is as tight as you can and leave it there for the entire day. How ya’ breathing?
– Shots: Fill one of our spare needles with saline solution, saline won’t hurt you, we would love something worse but don’t want to end up in jail. Give yourself a shot everytime we do our shot.
– Side Effects From the Shot: Bang you head against a wall, wrap yourself in a heating pad, wrap your entire body with an ace bandage tightly then finally treat yourself to some spoiled food or drink.
– Trouble Lifting Arms: Apply 20 LB wrist weights and try and reach for something on the highest shelf in your house.
– Spasticity: Hook bungee cords to your rear belt loops and rear pant leg cuffs then for your arms hook bungee cords to your shirt collar and cuffs on shirt sleeves then go dancing.
– Poor Hearing/Buzzing in Ears: Put a bee in each ear and then put a plug in each one…Bzzzzzzzzzzzzzzzzzz
– Balance and Walking Problems: Drink 100 proof grain alcohol and then sit and spin in an office chair for 30 minutes, now get up and see what happens.
– Urgently Needing to Pee: We put a .5 liter remote controlled water bag and drip tube in your pants, we point out 2 restrooms in a crowded mall, then we tell you that you have 30 seconds before we activate the water bag (by remote control) to get to a restroom. Just for spite we may make that 20 seconds without telling you.
– Bizarre and Inexplicable Sensations: Place tiny spiders on your legs or arms and allow them to periodically crawl around throughout the day, heck all day would be good too.
– Pins and Needles: Stab yourself repeatedly with needles all over your body or better yet….Get a very large tattoo in your most sensative area.
– Dizziness (Vertigo): Get on a gently rocking boat all day and all night and take several walks around the deck with your eyes closed.
– Fatigue: Stay awake for two full days to induce incredible fatigue and then cook dinner, clean the house, walk the dog and see how you feel. Please do not compare MS fatigue to you being tired from only a few hours of sleep – it’s not the same at all.
– Cognitive Function (Brain Fog): Take a liberal dose of sleeping pills but stay awake. Try and function properly and think clearly. To make it even more real without killing yourself of course, take the sleeping pills with a small sip of wine.
– Bowel Problems: Take a 4 day dose of an anti-diarrhea medicine followed directly by a 3 day dose of stool softeners for a minimum of 3 weeks, at the end of 3 weeks sit down on a hard uncushioned chair and stay there till tears appeared.
– Burning Feeling: Make a full pot of boiling water and then have someone fill a squirt gun with the boiling water and shoot it at yourself all day long. However, you can give us the pleasure of shooting you instead…optional of course.
– Intention Tremor: Hook your body to some type of vibrating machine try and move your legs and arms…..hmmm are you feeling a little shaky? You are not allowed to use anything fun for this lesson.
– Buzzing Feeling When Bending Our Heads to Our Chest (L’Hermitte’s): Place an electrical wire on your back and run it all the way down to your feet, then pour water on it and plug it in.
– Vision Problems (Optic Neuritis): Smear vaseline on glasses and then wear them to read the newspaper.
– Memory Issues: Have someone make a list of items to shop for and when you come back that person adds two things to the list and then they ask why you didn’t get them. When you come back from shopping again they take the list and erase three things and ask why you bought those things.
– Foot Drop: Wear one swim fin and take about a 1/2 mile walk, nothing else needs to be said for this one, you’ll get it.
– Depression: Take a trip to the animal shelter everyday and see all the lonely animals with no home. You get attached to one or more of the animals and when you come back the next day you come in while they are putting her/him asleep.
– Fear: Dream that you have lost complete feeling in your feet and when you wake up wiggle your feet, just so happens they don’t move. Think about this every night wondering whether something on your body won’t work the next day when you wake up.
– Swallowing: Try swallowing the hottest chili pepper you can find.
– Heat Intolerance or Feeling Hot When it’s Really Not: You are on a nice vacation to Alaska. It’s 35° outside and 65° inside. Light a fire for the fireplace and then get into it. Once you have reached about 110° tell me how you feel, even a person without MS would feel bad, now add all of the above symptoms
welcome to our world.
Then Finally…
After subjecting yourself to the items above, let everyone tell you that you don't look unwell, you are just under a lot of stress, it’s all in your head and that some exercise and counselling is the answer.

Loving the Gas Chamber

Perhaps it's the act of 'doing something' or that all the extra oxygen I'm getting is doing something great. I don't feel like my head is full of fog and I haven't since that first treatment on Tuesday. 'Cog-Fog' is a common symptom for MSers and like other symptoms can be anything from sometimes losing words, talking like Yoda inability to make decisions or even loss of core memory function. I'll be honest and say it scares me even more than the physical symptoms, because your mind is your strongest tool, if it's not functioning properly then the rest isn't going to fare well.


I'm going to get 'personal' now with an Interweb full of strangers ... sharing your 'toilet habits' on a first meeting definitely is a little uncomfortable, but hey it's one of those things that MS can do to us and if none of us talked about it we'd all think it was just us and go quietly mad.


For months now I've had no in between state for the urge to go to the bathroom. it's either been 'all's good' or the screaming claxon in my head yelling 'GO NOW' which just to add a element of danger can mean you've got anything between 20 seconds and 60 seconds before you're probably going to disgrace yourself. Imagine knowing the bomb is going to go off when the timer get's to zero but you don't know how long there is on the timer - going to the bathroom becomes a thrill sport like bungee jumping or running naked through a bear infested wood with honey on your bum (too much ???)


I'm not quite so scared of my 'nether regions' even though the numbness to my body remains the same but there now seems to be more awareness of the need to 'go' reducing the element of danger


I've had 2 'gas chambers' in 3 days, so I can't say whether it's the lack of fog in my brain what is increasing the awareness of the bathroom needs, or something more directly connected to 'down there' is it more obvious because I've had 2 sessions in 3 days? How long will it last? Is it all in my mind and just the act of doing something has made me imagine improvements? Do bears with MS ..... in the woods ?


It's Friday, the sun is shining, it's warm, the dogs and I are snuggled on the sofa together and all things considered life is pretty great

Thursday, 16 April 2015

Credit where it's due

I wanted to ensure I gave credit to some of those who have done this previously and helped enormously in my choice of treatment for my MS


Emma's journal is here : http://lemtrada.blogspot.co.uk/
Glenn Scott who is hugely active on the Facebook Group : Lemtrada for MS Treatment at : https://www.facebook.com/groups/1723792797845130/
The UK and Ireland Facebook group managed by the wonderful Tina Mc Gonagle : Lemtrada, Alemtuzumab (Campath®) for the treatment of MS UK And Ireland at : https://www.facebook.com/groups/1537738223107805/


Stumbling in Flats .... brilliant, funny and just epic and it's being published as a book !!! : http://stumblinginflats.com/


David's story is a little different as he wasn't part of the trial program but also very informative here : http://www.davidscampathstory.org/

I'm also a very active member of ShiftMS, an inspirational online MS community of upbeat positive people who share experiences, symptoms and treatment experiences. We provide each other with information and support and I can not recommend them highly enough as an excellent place to talk to other people with MS www.shift.ms


Off to the gas chamber in a moment ... or Decompression chamber as the MS Therapy Centre in Reading call it 24ft oxygen treatment today the one I did on Tuesday was 16.5ft and I came out feeling clear headed and full of energy - actually I still do feel that way after 48 hours, fingers crossed this one has the same effect or better.


Happy Thursday all xx

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