If you are struggling with the water ....

Then I hope this will raise a smile xxx





as usual today is another good day on the MS front.


I'm a little tired but then I've not gone to bed until midnight every day this week then the alarm goes off for work at 06:30 so I only have myself to blame for doing that. I should go to bed a respectable time on a work night.


Looking forward to the weekend (well bits of it) I'm going to test the wine v water theory Friday recover Saturday and then off to Solihull Sunday to meet my sister-in-law and the minister to discuss Ian's funeral arrangements.


first three weeks are done tomorrow .... downhill now to a month post treatment !!!! WOOHOO xxx

Mid week 3 update

Well update time again ladies and gents
Still feeling fantastic MS wise, all the improvements (which may still be courtesy of the steroids - too soon to tell) are still there. Fatigue is not there, cog fog is not there. Feeling in my legs is STILL there, the feeling in my left arm is still partially there, and YAY I'm not scared of needing the bathroom all day every day either.
The random itchies keep returning every now and then (not every day) but they disappear quickly enough with an oral anti histamine so not really a challenge. I've also had some spots on my face, a little like being a teenager again - quite a strange experience and not very dignified at the ripe old age of 43 :-)
I managed to get an oxygen treatment in yesterday evening which means for once I'm not disappearing from work for a 3 hour jaunt to the gas chamber. For once I haven't felt the great benefit from it because the starting point was so much better than it usually is. In Tracy logic doesn't matter if I 'need' it, I want those super healing hyper oxygenated red blood cells zooming around inside me keeping everything in top shape and if it reduces or stopps the inevitable Steroid Crash then happy days.
Emotionally I'm wrung out, mentally I feel tired but I'm pretty sure that's life related and not MS. Ian's funeral will be June 24th, so a long road to go on that one still. House sale and purchase is still on track. It's all a bit much even for me who really does hit my peak when everything snowballs a bazillion things at all happening at once.
I will get my sense of humour back and stop being so morose I promise
Tracy
Love and plague free hugs to all of you (but don't hug me back if you're a plague monster xxx)

The UK Lemtrada 'what happens when' guide

I'm going to start with the caveat that this was 'my running order' it doesn't happen precisely this way everywhere but it should give a lose guide to how things will proceed after you and your neurologist agree you are suitable for the treatment.
If some of the non UK based readers can copy paste and update a little to a 'local guides' thing in the comments for this then I'm pretty sure others would be very grateful xxxx

Lemtrada – Basic treatment running order from Agreement to consider you as suitable for Lemtrada to post treatment and release – UK PATIENTS NHS ONLY

UK based people and Lemtrada on the NHS timeline which may help people get an understanding of the order things happen in.

 

Pre-Treatment Running Order :

• You agree with your Neurologist that they will put you forward for treatment by your local authority (mine was Hampshire health authority) and they have to agree you meet the criteria, active disease, active lesions, other treatments failed or unsuitable,  and that they will meet to agree to fund your treatment (£56,000 for the Lemtrada alone and then the additional costs of the monthly blood / urine tests for 5 years – they start after your first treatment and end 4 years after your second)
• You will have a chest X-Ray to confirm you don’t have TB (tuberculosis)
• An MRI – Certainly head and neck, but likely to be Head, Neck and full spine – be warned this takes about 1 hour 40 minutes and you’re probably going to have a thumping headache when you come out. This is to get a baseline on your lesions and their activity to use as a comparison for post treatment MRI’s
• Blood tests to confirm a load of things including you don’t have AIDS or Hepatitis and a bunch of other stuff – This needs to be within a few weeks (3-4) of your treatment start date so don’t panic that this is might be left very late
• Urine tests – not entirely sure what they look for in there, but I did get my MS Nurse call me to tell me I wasn’t pregnant ….. I hadn’t expected to be and would have been very surprised if I had been
• Important thing to note – you are required to drink 3 litres of water a day during and after your treatment – DO NOT turn up on day 1 and think this is it. Drinking that much water means a revolving door to the bathroom – you will have a bladder the size of a PEANUT. It takes 2-3 weeks to get used to that quantity and when you’re plugged into a drip for 5+ hours you need a bladder the size of Belgium so you’re not running back and forth to the toilet !!!!!
   
  During Treatment Running Order :
  Day 1

1. Admission and if they need to do any repeat testing they will do this first – Urine test – they’re making sure you aren’t pregnant again (Very important for the boys ;-)….)
2. Cannula  in for the infusions. It depends how easy you are to Cannula , and the policy of the hospital you’re in. This may be in your inner elbow, the back of your arm between your wrist and elbow, back of your hand or anywhere else random they like to stab people – it doesn’t really matter
3. Oral Anti-sickness meds – I never felt sick during treatment so I presume they worked nicely
4. Anti Viral Medication  - to keep away pesky stuff like Hepatitis, Thrush and if you’ve had chicken pox in your younger years then Shingles is a possibility as the virus remains in your spinal fluid then shingles is how it comes back
5. Paracetamol – well I was given it at this point anyway
6. Saline solution to flush the drip line (just a push with the syringe)
7. IV anti histamine (just a push with the syringe)
8. Steroids  Drip bag on a stick thing takes 30-40 minutes depending on how quickly your veins slurp it up – Keep mints handy – IV Steroids leave what is described as a ‘metallic taste in your mouth’ personally I think it tastes like nail varnish remover smells but it goes when the infusion is over.
9. Lemtrada – the good stuff – The drip is set up for a 4 hour controlled infusion – This can be slowed down if they you need it over a longer period – for the first 2 hours they will do OB’s (Observation’s) to monitor your Heart Rate, Blood Pressure and Temperature every 15 minutes to ensure you are doing well with it. After 2 hours they relaxed my OB’s to every 30 minutes for the last 2 hours then every hour for the next 4 hours.
10. Saline solution to flush the drip line – this will be a drip infusion and will probably take 30 minutes to flush every last drop of the Lemtrada from the IV line into you
11. Oral Anti-sickness meds – I never felt sick during treatment so I presume they worked nicely
12. Anti Viral Medication  - to keep away pesky stuff like Hepatitis, Thrush and if you’ve had chicken pox in your younger years then Shingles is a possibility as the virus remains in your spinal fluid then shingles is how it comes back
13. Headache is a possibility at this point – not everyone gets the ‘ice pick in the brain’ headache but Paracetamol does get rid of it – make sure you get some if it happens don’t suffer – I went down to the hospital shop when they said it wasn’t part of my prescription and sorted this myself
14. Through the night they will relax the OB’s to ever 2-4 hours so you can sleep – take ear plugs and an eye mask – hospital wards are full of sick people who are noisy and it’s not dark so do everything you can to help you sleep

Day 2

Repeat all steps 3-14 (possibly with or without headache)

Day 3

Repeat all steps 3-14 (possibly with or without headache)

1. Possible that the Lemtrada rash may appear or start to appear at some point today – if it does ASK for more Anti-histamines – don’t wait for them to appear magically ask for them.

Day 4

Repeat all steps 3-7 and 9-14 (possibly with or without headache)

1. You may or may not get IV Steroids on Day 4/5 some people prefer to have them, but I don’t know if it makes a difference. Personally I didn’t and it wasn’t a problem
2. Day 4 is traditionally RASH DAY – not everyone gets it but those of us who did  it was full blown rash day 4 (possibly with some itchies preceding it on day 3) A lot of the people I’ve talked to say it comes on about 5-30 minutes after the Saline Flush at point 9 – If it happens ASK for more IV Anti-histamine straight away – There’s no mistaking it, you’ll look like you’ve been rolling in nettles or been the victim of an acid attack and you will suddenly have a deep and horrifying understanding of why wishing ‘May the fleas of a thousand camels infest you’ is such an awful thing to wish on anyone – I would happily have clawed my own flesh off despite the creams and gels that I and others have recommended.

Day 5

1. Last one – same as day 4 hopefully without the rash – if the itching etc persists just keep asking for IV anti Histamine they can give up to 4 doses in 24 hours !!!
2. RELEASE – You will get Anti Viral’s to bring home, mine are Twice a day for 4 weeks, Oral anti-Histamine (4 a day if required) to be taken when needed, Paracetamol in case the headache still persists.

RELEASE DATE + 4 weeks and EVERY 4 weeks for 5 years

My MS nurse has scheduled all my monthly blood and urine test for the next year in advance – every 4 weeks I have to either go to the Pathology lab at Basingstoke Hospital take a number and sit in the waiting room from hell or I can make an appointment with my doctors and have it done at my surgery in comfort – I’ve chosen Plan B, doctors for me every time. My next Neurologist appointment is August 8^th and I expect another MRI before the end of the year

There may be slight variations on this from hospital to hospital, but this is the gist of it.

 You may come out of hospital and feel great Steroids bring down the inflammation in your brain and spine very effectively, but it’s a ‘quick fix’ not a permanent one. It will last somewhere between 3-8 weeks and then you may experience ‘Steroid Crash’ it’s like your MS has all returned in a bloody big tidal wave and may even feel like a severe relapse … it’s not usually, you just truly have felt that crappy for a very long time but it got worse over a very long time and until it hits you in one go you don’t realise how very bad it was. Take heart, if 3-5 days steroids can give you this, there is hope with your immune system squished your central nervous system has 2 years to make some repairs and the steroids have shown you that you’re not completely buggered after all.

You may be incredibly fatigued; Did you come out feeling great and all excited and use every drop of your energy in one go? were you incredibly fatigued when you went in? did you sleep well in hospital? Did you sleep well before treatment? Have you slept well since treatment? Are you eating right? Are you still drinking your water – you were not supposed to stop when you left the hospital you need to keep this going for as long as possible it’s very good for you.  You need to do everything you can to support your body before during and after treatment, is there something you could do? Vitamin supplements or mineral supplements, personally I recommend Oxygen Therapy at your local MS Therapy Centre, it works wonders for me. Lemtrada isn’t a magic bullet, support yourself and give yourself everything you can to help what Lemtrada has done to aid your recovery but please don’t sit back and wait for the miracle to turn up on it’s own, be kind to yourself and your body treat it to healthy things and nurture it whilst reaching forwards to grab that recovery with both hands and drag yourself towards it as fast as you can

Hope this helps xxx

Raising MS Awareness - My interview with MS Trust

Yesterday I was interviewed by a lovely chap called Stephen for MSTrust.org.uk on the subject of MS and my choice of treatment .....
This is the list of questions they had for me :
What treatment options were you offered when you were first diagnosed? Did your neurologist discuss your options with you?
A - Beta Inteferon, Tecfidera initially, both of which would have serious impacts on my life or existing medical conditions. Then Tysabri was offered, by that point I had done all my research, I knew I wanted Lemtrada - No negotiating with MS it was going for my legs - I wanted to crush MS into submission. My neurologist listened to my reasoning for Lemtrada over the others, laughed and said she should have expected me to say that, understand what I wanted and to put my case forwards for having it then got on and started the process - Dr C is EPIC

Did you do any research yourself to find out what your best options were? What did you find useful and not useful?

Loads, my MS Nurse suggested Shiftms an online discussion group which is incredibly positive, they also have Emma as a member, one of the first to put together an amazing Blog about Lemtrada and her experience with it. From there by the powers of facebook I found the 2 Lemtrada groups which are incredibly informative with people having treatment posting in real time about their experience and people who have had Lemtrada all the way back to the initial trial offering a wealth of knowledge and support to the 'new Lemmies'.
 Google 'Lemtrada Blog' 'Lemtrada Journey' - basically Lemtrada anything there's a wealth of information out there. Add in Campath or Alemtuzumab and off you go, the history of the drug unfolds along with a wealth of information about how it's administered, what it will do, the risks, the benefits. My first and primary goal was to halt the progression dead in it's tracks - any improvement of existing symptoms is a bonus (of course so many people have improvements that if I don't see any I'm going to be as mad as hell and feel really really cheated, but the primary goal is to halt the progression - it got this much and I'll be damned if it gets any more from me!!!!)

Did you come across the theory that “early aggressive” treatment might the best option for people with MS? If so, where? (A blog/the Shift forum/other?)

The aggressive early treatment theory was something on the drug recommendations for people with MS, unfortunately the guidelines produced then stated you have to have tried and failed 2 other DMD/DMT's before you're offered it - Erm sorry did you not read the 'early treatment works best' bit on the drug profile ? 2 other treatments could put you getting Lemtrada back 2 years ... that's 2 more years of lesions and scaring to your brain and spine that might not be able to repair if left long enough (think of a scab on your skin - don't mess with it allow it to heal quickly and it might repair with no scar - pick at it, scratch it and delay it's healing and it will end up as a bigger scar than the original injury and it won't ever go away), 2 more years of potentially disabling symptoms (bear in mind the first things it did to me was take away my ability to feel anything - then it went for my legs in a big way) - sod that - the project manager in me has to plan for this, ensure I have all the required resources at the right time to mitigate the risk of failure to deliver (a good and MS Symptom free life)

How did Lemtrada first come up as a treatment option – were you offered it or did you push for it?

As I said, I went in to see my neurologist armed with every piece of information I could about the drugs I had been offered, the alternatives I might be offered and my compelling reasons for what I wanted. I treated it like the summing up of the evidence presented to the jury and a job interview combined. I had everything written down, my notes and questions for Lemtrada and all the others there in nice concise bullet notes so they were easy to scan and read and cross off when they'd been covered (cog-fog meant I needed those rather than my defective memory)

Were there any difficulties in accessing Lemtrada once you’d made your decision?

None at all, relatively straight forward to be honest. A chest x-ray (YAY I don't have TB) Bloods - lots of bloods (YAY I don't have AIDS or Hepatitis either) I'd had 2 lumbar punctures recently but they are not always required, MRI - full brain and spine (1hr 40mins in the machine - didn't have a headache when you went in - do now :-) ...) Lots of peeing into teenie tiny pots always wash your hands boys and girls xx Then in I went - all rather straight forward
My honesty at saying I'm a type A control freak who wants to fight and is arrogant enough to think I will win is apparently 'refreshing'
So either they will think I'm a total head case and I'll end up on the cutting room floor, or I talked up a storm and poor Stephen didn't get a chance to write it all down so here's the clip notes Stephen xx


I'm still germ free, I'm back at work too in my quarantine facility (the glass video conference room at the end of the building) fatigue free, I can still feel with my legs and arms and JOY OF JOYS - I don't know how I missed it, but the bathroom panic situation seems to be more under control right no (please *insert deity of your choice* if everything else regresses a bit don't take this away from me)


We now have confirmation Ian's funeral will be June 24th at 12:30 so some time to prepare, some time for the rawness of the grief to lose some of it's edge. Just time


Love and plague free hugs to you all xxx

Early week 3 Post Treatment update

I've done really well over the weekend MS-wise.




What I don't have :

• No Cog-fog
• No foot drop
• No spaghetti leg (but there is occasional weakness in my knee which makes me aware I should be careful)
• No fatigue
• No constant achieness

What I do have :

• Proper feeling in both my legs and feet (stepping on lego would hurt now and the dogs licking my feet tickles again)
• Some feeling in my left arm (not full feeling but something is better than nothing)
• Less of the constant electrical feeling in my left hand (it's not as bad as it was)
• Balance - well it's better but then I've always been quite clumsy so I can't lay all of that on the MS
• A clear head - it feels good to have most of the words back although I do sometimes still squish words together (my brother said to me on April 30th when I wished him 'Bappy Firfday' that I'd always been a bit special but now I had a good excuse)
• Energy - I feel like everything is normal but I'm not pushing my luck and doing too much with that I think the crash would be quite spectacular if I did

What am I still doing :

• 3 Ltrs of water every day - very important to keep hydrated, headaches, sickness and dizziness are all symptoms of dehydration which I am keen to avoid.
• Vitamins and minerals - Vit D, Vit H (Biotin), Calcium and Magnesium, fish oils, Evening primrose (every woman should take this to stop us being homicidal monsters once a month), Multivitamins.
• Oxygen Therapy - twice a week whether I feel like I 'need' one or not - Super healing oxygenated red blood cells can only possibly be a good thing.
• Taking it easy - I don't want to discover the extent of my energy levels at the cost of having them available to me all the time.
• Getting lots of sleep - sleep is healing both mentally and physically and right now mentally I need a lot of that.

What I'm taking from this :

• Even if it's a temporary recovery I now KNOW recovery is possible with time and no MS aggression - if it does revert a little it's the steroids wearing off NOT another relapse so I will give it the time it needs.
• My journey this far (MS-wise - the personal stuff is just horrific and devastating but the two should NOT be confused) has been incredibly uneventful and positive

I would recommend this treatment to anyone with RRMS, with the caveat that nothing in life is free you have to be proactive, work with your body and your treatment to support it and help it every step of the way. Don't just sit there and expect the lightening to strike and a miracle to happen, actively encourage every possible way to improve your health, your wellbeing and also your mental positivity.




Two songs go round in my head, very different ones but they work for me.


Things Can Only Get Better by D'ream - because it's true for the next 2 years MS-wise they only can
Something Inside So Strong by Labi Siffri - my desire to be ME, to have CONTROL and be FREE to live without MS locking me into the prison of my own body


Find your inspiration - MS scares me more than anything the treatment could do


Love and no germy hugs to you all xxx

2 weeks post update

Hi ladies and gentlemen


Two weeks ago today I had my day 5 infusion, in the 2 weeks since then MS-wise life has been really good. I have energy, I have feeling back in my left arm (not much but it's better than it was) I have feeling back in both my legs - proper feeling and with it the foot drop seems to have disappeared, I haven't face planted with Spaghetti leg in the last couple of weeks even though at times my knee has felt weak. I also don't feel 'cog-fog' which with everything else going on I would have expected to be the worst thing


There's a very real possibility that this is simply the immediate effect of the IV steroids during the treatment and it may be temporary, however the inflammation is now under control, MS is no longer nibbling on my Central Nervous System, an if some steroids can't do this then I have great hope that my CNS will be able to do some repairs on it's own and at least keep things at this level or better eventually.


As always I'm taking my extra vitamins and minerals, drinking my 3 litres of water  a day and I've got an Oxygen Therapy planned for 13:15 today - even though I don't feel my usual MS cog-fog, limb fatigue and aches I'm doing it because it makes my red blood cells super healing and that can only help with the treatment and the repairs to my CNS - actively promoting repair not just sitting here with my fingers crossed and hoping the miracles come.


Gareth is at another funeral. today down in Portsmouth for his cousin who passed away even younger than my brother :-( - I couldn't bring myself to go with him, and I didn't know him, but I don't think my grief for someone else would be appropriate.


The house sale and purchase is going well and I'm going back into work on Monday until the funeral, I need something to do and keep me busy while the time passes.


Love and non Germy hugs to you all xxx

Lemtrada update - nearly 2 weeks post

Hi there


Apologies it's been a few days, it's all been a bit frantic.


MS / Lemtrada status


What I don't have

• I don't have Fatigue
• I don't have cramps or spasms reported by others who've had the treatment
• I haven't had anywhere near as much foot drop as normal
• Spaghetti leg isn't collapsing underneath me, but it does sometimes go a little weak

What I do have

• I have some sensation back in my left arm - it's not proper  feeling, but it's better than it's been since November last year
• I also have most of my feeling back in my legs again which is brilliant
• ITCHIES ..... Oh lord the ITCHIES in both my hands and wrists - it feels like Lemrash itchies which seems to come on in the evening and is resolvable in about 20-30 minutes with anti-histamine
• I DON'T HAVE ANY COLD OR OTHER TYPE INFECTION - which I think is a pretty major win after the time at the hospital with Ian before he passed away, and the number of people who spontaneously hug me on sight.

I'm still taking all my vitamins and minerals, my antivirals which are part of my post Lemtrada regime. I had 2 oxygen treatments last Monday and Friday but I did cancel this weeks not knowing where I would be and not wanting to let people down.


I'm emotionally wrung out, with losing Ian, treatment and being mad enough to sell our home through all of this, I guess it's to be expected.


Love and non germy hugs to you all xxx