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. .

Yikes 2 posts in a month

 Who is this person who's actually updating Tracy's blog I hear you wondering .... 2 posts less than 3 months apart - surely I'v...