Monday 28 December 2015

Week 32 Christmas time and family

It's Christmas week again, it barely seems like a few weeks since this time last year. It's true as you get older time flys past much faster, as a child it seemed like forever between chistmas times, the time at school seemed between holidays seemed to be forever when it was only 6 short weeks and birthdays took a lifetime to happen. Now at the ripe old age of 43 it seems to rush past so very fast, one thing is just done before the next is upon me and everything that's happened seems like yesterday.
The whole year has been so frantic, such good things happening because of Lemtrada and all those horrid MS symptoms disappearing, my beautiful friend Laura marrying her handsome David, her hen do in Las Vegas in January then being one of her bridesmaids on Valentine's Day, then the news that they are expecting a baby a few weeks ago - I can't tell you how happy I am for them  both and am already planning for lots of 'favourite aunty Tracy snuggles when the little one comes.
The year has also brought such heartbreak losing my brother a week after my lemtrada treatment at the age of 40, and then my grandmother in such quick succession on the back of losing my mum. So much heartbreak leaving me the last of my parents family line.
I've now added their names to the Christmas decoration that has the names of my mum, dad, Gareth's grandfather and his uncle, to lose so many in such a short time has been devastating.
But it's Christmas time to celebrate the love we have with those we love. Gareth and I are in Wales with my mums sister and surrounded by 5 dogs (2 of ours, 2 of Kathys and a guest dog for the holiday period and on Christmas Day a sixth dog ..... The humans will be outnumbered 6 to 5.
Christmas Day was lovely, very relaxed for me but we had overdone it a little the night before with wine, brandy and some whiskey ..... Not our best plan.
Boxing Day was equally relaxed apart from a second emergency trip to the vets for Amber-dog, she's eaten something nasty and got herself an infection and temperature and has been throwing up and trembling. A nightmare trying to get to the vets as the bridge in Machynllath was flooded out in the heavy rain and storms resulting in some serious diversions.Yet more antibiotic injections, anti sickness injections and tablets for another week for her (it's cost £163 and £183 for the two emergency treatments but at least it will mostly come back through the insurance)
So it's now the day after Boxing Day, we've travelled 3 1/2 hours cross country to Halifax (avoiding the terrible flooding in Balla after the storms where the lake breached) to see Gareth's family for a couple of days before we head home again and rescue the cats from the Cattery  (cue another £180 bill) it will be lovely to see everyone for a few days, catch up exchange gifts and just relax some more. There's been terrible flooding here in Yorkshire too, they might have to rename Sowerby Bridge to Sowerby Aquaduct and Hebdon Bridge to Hebdon On Sea, we saw barges all washed up on top of each other on the way here :-(
My last oxygen was the Tuesday before Christmas, we've walked loads talking the dogs out up and down hills - everyone got to see my leg tremor in full force for the first time going up one of the hills .... Kind of freaked them out a bit mostly fear I think at the thought they might have to carry me back along with 5 dogs LOL it's just tiredness from all the exertion of the last week, a couple of nights of good sleep and I will be back on form - might also see if I can sneak in an oxygen up here if Leeds is
open and has.a space for me. Still as ever feeling epic, totally grateful to have the treatment and all the good things it's brought for me.
I hope everyone had a great Christmas (so sorry if you're one of the people who's Christmas has been FUBAR'd in the UK flooding over the holidays, the forest fires in Australia or the Tornados and flooding in the US, I hope that soon life is sorted again.
Much love, healing thoughts no positivity being sent your way xxxx

Tuesday 15 December 2015

Month 7 blood results

As it's getting so big now I've hidden the first 4 months results so it fits on the page properly, The full spread sheet is uploaded to the files sections on both the UK and Ireland and the World Lemtrada groups on Facebook :-)
If anyone needs help getting their results into a nice easy to see format please drop me a message, I'm glad to help.

So the Lymphocytes are rising again (probably because I've been completely off my diet and enjoying wine :-) .....)
I've also got the winter lurgy so my body is fighting that right now ..... my conversation with my MS nurse this morning by email went like this :

Am I feeling better - LOL …. Now that’s an open question J
Yes I feel better than I did on Friday The pressure in my ears has gone completely (TFFT) – the never ending stream of snot seems to have dried into a cement ball behind my eyes which has resulted in a never ending headache made worse by the coughing and sneezing which rattles the cement ball around in my head. Oh and those gland’y things under the chin ….. like a pair of golf balls J
If there’s a bright side to having MS and an over active immune system it’s that I’m almost NEVER sick – I had chicken pox in 2003 but that’s the last time I ‘caught’ something – to be honest I think it’s is self-inflicted – burning the candle at both ends and in the middle a bit – staying up too late, wine, sitting outside with an iPad, wine, cigarettes in the cold etc – body has just decided if I won’t slow it a little then it’s gonna make me
I’m an appalling sick person -  because it’s so rare I moan about it constantly and want to punch things J xx

My MS nurse is awesome :-)

Anyway here they are - Lymphocytes now at a MASSIVE 0.88 at month 7 post - woohoo go Lymphocytes - but slowly :-) not concerned about the other bits that are a little elevated - lurgy fighting takes a little 'more'

  Lower Level Upper Level BASELINE October November December
Haemoglobin 120 160 144 136 141 130
WBC Count 4.0 11.0 11.9 7.3 8.3 9.8
Plt count  150 500 289 255 269 263
Rbc count  3.8 5.8 4.67 4.27 4.48 4.32
Haematocrit  0.36 0.47 0.445 0.414 0.434 0.417
MCV 76 103 95.3 97 97 96.5
MCH 27 32 30.7 31.9 31.5 30.1
MCHC 300 360 323 329 325 312
RDW 11 16 13 12.8 12.5 12.5
Hypochromic  RBC % 0 2.5 0 1 1 3
Neutrophils  1.8 8 8.09 5.69 6.72 7.94
Lymphocytes 1.3 4 2.5 0.73 0.66 0.88
Monocytes 0.2 0.8 0.83 0.44 0.5 0.59
Eosinophils 0 0.8 0.24 0.29 0.17 0.2
Basophils 0 0.3 0.12 0 0.08 0
Liver Function            
Bilirubin 0 21 9 5 5 5
ALT 0 60 21 14 15 14
Alkaline Phosphatase 30 130 51 46 44 49
Albumin 35 50 45 42 42 40
Thyroid Function            
TSH 0.35 4.5   2.28 3.3 3.4
Urea and Electrolytes            
Sodium 133 146 139 143 139 147
Potassium 3.5 5.3 4.7 4.6 4.4 4.3
Urea 2.5 7.8 3.8 4.2 5.8 3.2
Creatine 44 97 62 46 78 63
eGFR per 1.73sq m 60 99999 >90 >90 >87 >90

Monday 14 December 2015

30 weeks - I've got my Winston home - and a cold

30 weeks and going strong

Good morning ladies and gents, I hope you all had a great weekend.

First things first – I’VE GOT MY WINSTON BACK :-) he’s still Winston but so much more attentive, calm and well behaved. He now walks beautifully on the lead, his feeding routine, commands and play are all different and we need to practice hard with his to make sure that all the last 4 weeks hard work is built on and not neglected. He’s now whistle trained so I’m hoping that he can go off lead and know he’s going to come back to us.

Since last Friday I’ve been full of cold, my sinuses and ears have been horrid. Being honest with myself, I’ve brought this on myself over the last few weeks, I’ve overdone things, burnt the candle not only at both ends but a little in the middle too. Three days of Berocca, Paracetamol and some serious rest and I’m now feeling a lot better. As usual it didn’t stop me doing anything it just made it more difficult.

I’ve learnt a big lesson this weekend – Oxygen Therapy and a head cold are not compatible – We got to 20ft and my ears were agony it hurt so much. Fortunately my fellow gas chamber people have seen this happen to people before and so had the Operator, they slowed the descent down and kept checking on me. We finally made it to 33ft, my ears felt like someone elses fingers were wedged in there and I was profoundly deaf but at least the awful pain had stopped. When the chamber re-compressed it felt like Snap Crackle and Pop were having a party in my ears with about 30 of their friends :-) By the time it was fully back to normal pressure it all calmed down, my hearing had returned and the popping in my ears had stopped, I did feel my usual great afterwards – well apart from the clogged sinus’s and the blocked ears :-)

Month 7 blood test and peeing in a bottle happened on Friday so I’m expecting my results shortly. I will publish them here there and everywhere. I suspect the results this month will be quite funky what with the cold and everything so I’m not going to worry too much about which way they go.

A grand total on ZERO Christmas presents were purchased over the weekend – total season fail :-( That officially leaves us with one weekend (which we’re back to Tunbridge Wells for Training with Winston Saturday – double booked myself so I’m going to have to rearrange Oxygen Therapy.

Complete Tracy Fail.

I refuse to get wound up about this …. I’m off to Amazon Prime to go hump that free delivery that I inadvertently ended up with because I forgot to cancel the 30 day free trial :-)

Monday 7 December 2015

29 weeks and considering roller skating EEEK

Week 29 already and it’s going so very fast. It took most of the week to recover from last weekends over exertion, but by Friday I was back on form again. Amber-Dog spent the day at the vets again having surgery on an ulcer on her left eye treated so that’s both eyes done in the space of a month. I’m rather hoping the claim to pet plan gets paid quickly this time as another £200 bill just before Christmas isn’t ideal.

I sat outside for ages on Friday night reading a book and oh boy did I pay for that on Saturday morning, my left hip seized to completely. I couldn’t lie down, sit down, stand up or make any kind of movement without being in the most excruciating agony. My pain tolerance is pretty high – I’ve broken bones and not had them treated for days, but good grief this was something else Gareth was gobsmacked when. I relented and took one of my remaining stash of CoProxamol for it (distalgesic) it’s the only pain killer that ‘really’ works on me but since it was removed from the prescribed lists globally because people had been using it to take their own lives it’s incredibly hard to get. Finding a doctor willing to prescribe it is hard, a pharmacist who’s willing to issue it is even harder. I now have 7 left of the 100 I was prescribed in February 2010  - time to start seeing who I can get the prescription from (I’ve found a pharmacist in Halifax who’s willing to dispense it) I’m hoping Dr C will write it up for me when I see her in February.

MS wise everything remains on a nicely even keel, no symptoms surfacing, all remitted symptoms remain gone and life is lovely and normal for me.  I’m even contemplating getting my roller skates out of hibernation when Winston comes home on Sunday so that he can have a proper run in the park instead of a stroll around it at my natural speed. Definitely need to practice without a dog first to see if a) I can balance on them at all, b) if I’m likely to kill myself in the process c) what my energy levels are like - I can’t think of anything worse than getting a long way from home or the car and not being able to get back. You must think I’m an idiot contemplating this after I pretty much broke myself last weekend and the one before overdoing things, but if you don’t ask you don’t get and if I try and the answer for now is no – well I’ll ask again another time and keep trying until the answer is yes.

We now have a total of 2 Christmas presents purchased (managed a whole ONE gift over the weekend) At this rate we might be ready for Christmas by next summer :-( On a bright note I’ve not only remembered my Sister In Law’s birthday this year, I’ve sent a gift and card too which should be arriving on time. My brother if he could, would be phoning my husband and asking who I was and what I’ve done with Tracy as I’m clearly an alien replica of myself which is more efficient than the original :-)

First Christmas without any of my immediate family this year, off to Wales to spend it with Aunty Kathy for the first time in many years (I think Christmas 2003 was the last time) Looking forward to some serious down time with loved ones very much.

Hope everyones plans for the holiday season are progressing with more success than mine. Stay well


Tuesday 1 December 2015

28 weeks and going strong

This week should be called ‘The things you do and The Price you pay’
In hindsight driving up to Birmingham Thursday night was a fantastic idea and a terrible one all at the same time
Fantastic because we were on the door step for the show and no need to get up at a time that’s only respectable if you’re still partying from the night before
Terrible because we both treated it as a night to party which involved far too many extortionately expensive cocktails, a very late night and a hangover in the morning.
When going to a food a drink show with many lovely tasters on offer and lots of walking to be done, having a hangover is a distinct mistake – It was probably early afternoon before I felt human enough to appreciate all that was on offer. By the end of the day though I was pretty badly busted – my back and hips were in terrible pain – I put this down to the fact that I’m a lazy mare who spends my life sitting on my considerable arse and am simply not used to being on my feet and mobile for that length of time at all. It was a very long slow walk back to the hotel to collect the car and move to the St John’s in Solihull with some much needed pain relief and a long hot bath.
Friday night at the St Johns with Aunts and Uncle, Sister in Law and her mum was a nice get together before the furtive sneak onto the golf course on Saturday morning. We only put Nana’s ashes where we had put Mum and Dads (Mum was still there 18 months on and I could still see where she was – I had a little chat with her – contrary to popular myth it actually takes a really long time for ashes to disappear it’s not all romantic floating away on the breeze like it is in films) Karen has told us that Knowle Church where my brothers funeral was held can put up a plaque for him if his ashes are there with it. There was no way Ian was leaving Knowle – he loved it there, his life, friends and work were there, it seems right and fitting that since you couldn’t get the boy out of Knowle he is immortalised there forever hopefully out the front where he can see the pub and his friends can wave to him on the way past.
We had a nice drive up to Halifax and arrived at lunchtime, great to see the family and catch up but a very short visit and we need to have a decent visit up there at some point. Steve’s homemade Burrito’s for dinner – YUM YUM I sat drooling while he was cooking and by the time it was ready to be served I’d happily have gnawed on my own arm.
Sunday was the long drive back home again, not too bad, a new route through the midlands courtesy of the traffic management sat nav thingy but home in time to collect Amber and be there to receive the shopping delivery (thank goodness for online grocery shopping – we would probably be feral by now if that wasn’t an option)
Monday I made it to work, but that’s really as good as it gets, I had what I thought was a headache most of the day and when it got to 15:30 I decided to throw in the towel and head home – finish the day from the sofa. I stood up and the world tilted sideways – BOOM – guess what Tracy – It’s been 15 months since your last one, but HERE’S MIGRAINE. I made it home and slept off the worst of it but oh boy was that one a surprise. I’ve known for weeks that I was going to pay a price for the weekends activity, it’s not a surprise at all, it’s not the treatment or a relapse, it’s just overdoing it and I need to rest up and get myself back on an even keel.
I was supposed to call and get an update on Winston yesterday but I was so whacked out of it that I forgot – I’m an awful person – how could I forget my baby boy just because I had a bad head :-( I’m hoping to hear from the trainer shortly with an update.
So happy December boys and girls, have you all been good this year? Personally I think being bad is far more enjoyable especially if it’s with great company :-)
Have a great week xxx

Monday 23 November 2015

Week 27 And Winter is officially here

Week 27 – YAY I’m officially on the downward stretch to my second treatment in May next year. I’ve done so very well so far the little voice in my head whispers ‘are you sure you really need to have round 2’ but the little voice is talking complete and utter nonsense – to even contemplate not having the 2nd treatment would be like getting off a train half way to your destination and then complaining that you’re not there yet. Sometimes you just get lucky and the immune system learns it’s lesson the first time it’s taught it.

All my improvements are still holding since Lemtrada, my left hand remains unchanged, still partially numb and those horrid electric worms are still there. It was the first thing that was traceable as MS related symptoms for me, so I suppose if repairs and improvements are working on a ‘first in / last out’ basis then it’s all going to plan.

The weekend has been spectacularly uneventful lots of rest, relaxation and chilling out with only the odd excursion to do essential stuff – like shopping so we didn’t turn feral :-)

I discovered in CostCo last weekend that they do High Dose Turmeric in tablet form – I know the purists out there in Turmeric land are shuddering at the heresy of even contemplating that, but it’s 95% circumin and I’m only taking the recommended dose (so is Amber-Dog) and my aching arthritic finger joints are not sore, or swollen and Amber-Dog is bouncing around like a puppy which for a nearly 10 year old Beagle is pretty much unheard of. She’s back at the vets tonight – I suspect on Friday she will be in for an operation again – The same one as 4 weeks ago, but this time on her left eye. Poor thing, she doesn’t seem bothered by the eye at all, and doesn’t understand why we’re constantly putting drops in it but it’s for her own good.
It' was -2 degrees this morning in Berkshire, a nice thick layer of frost on the cars and rather chilly. Fortunately we can just start the cars and let them warm up by themselves where we live so by the time I left for work it was defrosted and lovely and warm inside without my hands freezing to the steering wheel.

It’s a 4 day week at work this week WOOHOO – Thursday night we drive up to the Midlands then Friday the Good Food Show at the NEC – I’m so excited. As a ‘foodie’ this is the event of the year to see some celebrity chefs preparing yummy things, to try lots of lovely samples from traditional food makers and just revel in the smells and tastes on offer. I’m hoping that we can get some Christmas gift for the family while we are there - it shouldn’t ‘entirely’ be overindulgence just for ourselves. My Left leg seems very weak and the knee very wobbly this week, that’s mildly concerning with the plan to do lots of walking. I’ve just bitten the bullet and called the mobility centre at the NEC to try to book a mobility scooter – they’re fully booked naturally, but I’m the first one on the waiting list if there’s a cancellation. Worst case if my leg does decide to play silly buggers I’m registered for one now even if it’s later in the day and only for part of it. In the interim I might have a hunt for my folding walking stick (goodness knows where that ended up in the house move – I vaguely recall it being in a suitcase but after that its location is a mystery) – Please note I’m not saying this is a set back / relapse / deterioration in any way shape of form, I’m simply taking precautions and am aware of my own limitations and the project manager in me has to plan so that I can have my fun regardless.

I got an update from the Dog Trainer who has Winston on Friday – apparently the little sh-darling has been trying to dig under the fences in the secure play field to escape. He’s settled in well, and his training starts in earnest today. I do hope that he becomes star pupil and becomes the secure confident pup we know he can be. It would be lovely to know when we’re out walking he won’t react to everyone and everything we see without barking hysterically and jumping around like a crazy thing. Another 3 weeks to go – I hate that we’ve had to do this, I feel like we’ve failed him – abandoned him to someone else, but it’s so scary to contemplate that a person or another dog could get hurt by his boisterous enthusiasm and something we’re just not prepared to risk.

On a final note I’ve just realised the girl who sits opposite me at work is not just bi-lingual – she’s tri-lingual and she puts my linguistic skills to shame – I now feel more than a little intimidated and must practice more.

Happy last week of November Ladies and Gentlemen xxx

Thursday 19 November 2015

Thoughts on when to fight back against MS

I’ve posted this before in the blog, but it’s buried somewhere in the deep dark past, I thought it was probably worth posting my thoughts on the subject again for new readers.
Please bear in mind when reading this, it’s purely in relation to my experience and what I’ve read of the experience others have had in relation to their MS.
I guess you could say I was lucky with when I was diagnosed with MS, being diagnosed nowadays is infinitely preferable to being diagnosed 20 or even 10 years ago. There are so many treatment options available to each of us, and being a bit of a war mongering fighter because I’d had so many relapses in such a short time I chose to take the fight to MS before rather than later.
To recap, my status before treatment was as follows
  • Cog-fog -  My head felt like there was soup in it, remembering things like what I’d watched on the TV, the book I was in the progress of reading, conversations I’d had or was in the middle of having were hard or impossible to keep up with
  • Constant Foot drop  Mostly in my left foot which I had to watch with pretty much every step I took to make sure it was doing what it was supposed to be doing
  • Spaghetti leg This is my name for 'whole leg drop' - the extreme of foot drop that had me in a wheelchair coming back from Milan in April
  • Tiredness This one’s a bit contentious as I have NEVER allowed MS to stop me from doing things (except I didn’t go to the Good Food Show at the NEC last year because I couldn’t face that I would have to do it in a mobility scooter). I regard Fatigue as an extreme where the exhaustion stops you in your tracks makes going on impossible to achieve not just bloody hard, so I called what I had tiredness even if it did make me quite narcoleptic – I could fall asleep any time any place anywhere – Martini narcolepsy :-)
  • Bathroom Urgency - And oh boy it's not nice to hear that screaming claxon in my head yelling 'Go NOW you're about to embarrass yourself'
  • Optic Neuritis My eyes have always been pretty rubbish – my good eye prescription is 7.75 nd the bad one 10.75 with a 1.5 astigmatism on top of that. The pain in my eyes and loss of the ability to see anything in detail (like words on a page) terrified me in a way not much else could. My eyes might have been dreadful, but I could drive, read and live normally the thought of losing that was horrific to me
  • Lack of balance I couldn’t balance with my eyes open or closed, I  toppling sideways and needing railings to hang on to.
  • Sensation loss - The ONLY parts of me that actually had skin sensation was my right arm and from my boobs to the top of my head. I had no skin sensation there, but I did have electric shock / worms under the skin sensation inside whenever my skin made contact with anything, walking was like having scrunchy cotton wool under me feet, between my toes it was horrid. Acupuncture with electrical stimulus made it really clear how far the sensation loss had gone to my left side, it didn’t matter if it was turned up so I cried at the power on the right my left simply didn’t feel anything (imagine a Tens machine on full blast and how much that really hurts – to have that and feel nothing is very scary – and quite frankly for your sex life it’s really shitty)
None of these things individually or collectively made me consider myself as ‘disabled’ as the leg collapsing and sight problems came and went with annoying regularity. Apart from the MS stuff I considered myself to be in good health (that might have been a bit delusional on my part – Doctors and Neurologists told me to stop playing things down that for me might have been intensely annoying, but for someone else might have been catastrophic for their life and lifestyle)
I guess what I’m taking a long time to get round to saying is that I really wasn’t ‘That’ buggered when I started Lemtrada, yes I did and still do a lot of proactive self support things like the Oxygen Therapy, the vitamins and minerals, I still slosh down 3 litres of water every day and I probably always will.
Overall my Lemtrada treatment went as expected, the Steroids gave me the raging munchies, made it hard to sleep at night, and that awful moon faced glow, the anti-histamine made me sleepy (they give the super drowsy kind by IV – damn that stuff is effective) and Lemtrada – well apart from binding onto those pesky T and B cells and exploding them didn’t really affect me at all apart from the pesky rash and the itchies for a couple of weeks.
I did have some fluctuations in my BP whilst being infused, but mostly that was stress related especially when they had to change the cannula, I HATE being poked with a needle with a passion and in the weeks leading up to the treatment I’d had some real ‘stab and hope’ experiences where they’d blown the vein or took sometimes nearly a dozen attempts to actually get the needle in the vein so I was naturally a bit anxious.
I’ve read many stories of people who have a MUCH worse time with the treatment but in every case their start point has been much worse than mine was. Diagnosed for years rather than months, disability scores high and dependence upon walking aids or mobility scooters, unable to work because either they can no longer perform their role or are basically ‘unemployable’ as a result of their MS and their perceived reliability to perform a role.
The further along, the more severe the MS damage, the combination of the treatment protocol seems to have a far higher intrusion into their lives, fatigue, strength, spasticity (I REALLY HATE that word) all seem to be much prevalent the further along people are at the time of treatment. I suspect that expectations set by people like me probably make these people want to punch us smug gits in the face (when they can get the energy too – sorry a poor joke and rather bad taste I know :-( ….)
I guess we all plan for the worst and hope for the best, somewhere in between is acceptable too. The point of Lemtrada is to wipe out those cells literally ‘eating’ our myelin, scarring our brains and spines – to give us a ceasefire in hostilities within our own bodies. Like turning your computer off and on again sometimes the annoying thing goes away for a long time, sometimes it doesn’t happen again, and sometimes once it’s fully rebooted there it damn well is again. That’s why this treatment comes in 2 parts and if the annoying thing (MS) resurfaces again well then we have another treatment and put MS back in its box for another year.
Things I’ve read that have made me as mad as hell in the last few months:
  • ‘I’ve had my first treatment but I’m relapsing – damned if I ‘m going to do the second’ – what the actual hell? This is a 2 part treatment over 2 years - That’s like getting off a train half way to your destination and then whining because ‘you’re not there yet’
  • My Neuro / doctor says I’ only have ‘Mild MS’  - sorry that’s like saying ‘You’re a little bit pregnant’ whether your MS is distinctly aggressive and debilitating or persistent and annoying it’s causing scarring in your brain and / or spine which at any time can be one relapse away from horrendous disability – I found a marvellous article which explains lesions and brain atrophy which can be accessed here : - I have posted the detail of this with a picture that will scare the heck out of you in the post before this one.
  • I’m waiting for Lemtrada to ‘do it’s thing’ within 4 weeks lemtrada and all those pesky T & B cells are flushed from your body. At that point you’re reliant on your own body to undertake some repairs while it’s not under attack. The quality and efficiency of those repairs I suspect are going to be pretty much equivalent to how you maintain the marvellous machine that is your body – treat it badly don’t give it the right fuel and environment, do a little work on it to get it in shape, and it’s going to be like a neglected old banger – temperamental, unreliable and possibly rotting away on your driveway or in the garage from neglect.
My improvements since treatment are the almost complete reversal of my symptoms, I still tire easily, but I can combat that with being a lazy mare :-) (okay so that is an excuse – but it’s my excuse and I’m sticking to it) At the start stopping this awful illness dead in its tracks was my primary goal. I’ve said many times, I’ll do this every year for the rest of my life if that’s what it takes to keep the MonSter in it’s box.

My thinking is hit hard, hit fast take control and don’t wait until MS intrudes into your life more than you’re prepared to accept – fight back put the MonSter away and live :-)

If you’ve had MS for a LONG time, if it’s intrusive and disruptive to your life then this may not be the bed of roses I describe, but the end goal remains the same, stop the progression look after the machine, allow the machine to do what it does best recover – it’s just going to take a while xxx

I’m sorry I sound preachy and downright harsh, and as I say I’m not a medical professional I’m just an MS’er bumbling along the road of this treatment and hoping that something I write is useful to someone else in a similar situation. If it gives hope and strength then I wish you enough to win your battles. If I make you mad, I’m sorry (unless you’re mad for good reasons – then you’re welcome)

Most of all thanks for bearing with me xxxx

Lesions and Brain Atrophy in MS Patients

I've not found a way to contact the person who authored this to request permission to re-publish it. But if you're reading this - I'm sorry for doing it without permission, please feel to message me and tell me off :-(
However it's the clearest more user friendly explanation I've ever found on the subject which I think we all should read to understand what's happening to our brains as a result of MS whether we are currently relapsing or not.
The original publication is here, please click the link to credit the author :
The Life History of an MS Lesion
MS does it's damage by causing the nerves in localized areas in the brain and spinal cord to lose their protective sheaths, called myelin.  At first, when the myelin is being attacked, the body brings a higher blood supply to the area to fight the attack and the area becomes swollen and inflamed.  These areas now become "lesions."  At this point, when they are inflamed and blood engorged, they are called "active lesions."   At first the nerves, themselves, haven't changed much and they appear (and have the same density) as the healthy areas around them.  The body attempt to repair the damage that is being done and sometimes these areas re-myelinate.  They may disappear from the next MRI.  They aren't perfect in their function, but the area may return to a normal appearance.
If the nerves do not re-myelinate and the damage continues, for a long time the lesions sit as scars.  These scarred areas have damaged and dying cells in them, the blood supply shrinks, and the areas become more dense  - more dense than the normal brain around them.  These are the classic MS plaques and are considered old lesions. They show up as the bright areas most of us have seen in pictures and on our films.
If the attack on the myelin sheath is too strong for the immune system to repair, more and more myelin disappears and the area of nerves eventually dies.  Then it contracts and scars.  The blood flow is decreased to that area and the body tries to reabsorb the dead area.  It becomes "less dense" then the surrounding normal nerve tissue.  After a longer time - probably years - the scar can reabsorb completely and the area becomes "empty."  It's called a black hole.
How the MRI Shows These Different Stages of MS Lesions
When you image these lesions with an MRI you can see different things, depending on the technique, the age (stage) of the lesion, the power of the MRI, and whether contrast is used.
The first MRI image is done without contrast.  This technique will show old lesions that are big enough to be seen by the power of that MRI machine.  WE KNOW that many lesions in MS are too small to be seen.  If the newer, more powerful MRI with a 3 Tesla magnet is used many more lesions will be seen (by at least 25%) than on the older 1.5 Tesla machines.  The classic old, scarred, mature MS lesion is a little bit oval, will have well-defined borders and will be in the white matter.  Characteristic places (but not the only places) are subcortical, peri-ventricular and in the corpus callosum.  The classic MS lesion will also have it's long axis perpendicular to the ventricles of the brain.  Also, important and very symptomatic lesions are found in the brainstem, the cervical and the thoracic spine.  The spinal cord ends at the bottom of the thoracic spine, so there is no such thing as a lumbar spinal cord lesion in the normal spine.
The  scarred lesions will show up as light, bright areas.  These are the classic, MS lesions or "plaques."   But, with just the regular MRI image one can NOT say if it is old and dormant or if it has active inflammation in it.
Now the very old, scarred ones that have been reabsorbed will show up as a black (empty) space or black hole.  If there are many of these empty areas the brain will contract around them eventually and show up as a loss of brain volume.  This is also know as brain atrophy.  This is particularly seen in the progressive types of MS.  In brain atrophy there will be an increased space between the skull and the brain.  Also the deep folds in the brain will appear widened.  

This image has been added by me to demonstrate what the point above describes :

Don't know about you - but I can't see my brain functioning anywhere near as well if it looks like a shrivelled up walnut and has shrunk - Aggressive MS or moderate this was what I wanted to stop happening inside me even if the outside functioned pretty well.

However, a newly active MS lesion may not show up on a regular MRI because the area of nerves, though inflamed, is still pretty much intact and has normal brain density.  On the MRI it will look like normal brain.  Without contrast it won't show up and will be missed.
When the next phase of MRI is done the contrast is in the blood vessels.   Anywhere the blood vessels are more dilated than usual,  bringing more blood to the area, as in inflammation, the areas will "highlight"  or "enhance."  They show up as even brighter than the brain around them and brighter than an old, scarred lesion.  So new lesions will show up as "enhancing," or "active".  Also, older lesions, that have undergone a new attack right around them (also called reactivation) will show an enhancing rim or ring.  When you compare the regular MRI to the Contrast MRI you can see this reactivated, old lesion.
That's how some reports can call active lesions or some report no newly enhancing lesions  (these say the same thing).  Also since some new ones heal they can be compared to old films and show they disappeared.  In addition, between different sets of MRI done after a time has passed, the radiologist can see an increase in old and in new activity. .

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