Three years since my diagnosis.

March 23, 2015

Help me Father…it is now two years since my last post.

I wrote in march 2013, how, now we were at the one year anniversary of the original diagnosis, how well i was doing.

A further two years on, and no change. I’m still broadly following the overcomingmultiplesclerosis diet – avoiding milk products completely and eating less red meat (slightly less…) than before.

I almost never eat pork either, although i do still have a weakness for decent Spanish Iberico Jamon.

My Daughter will be three years old this week (and my son has just turned 5 in December). I remember back to the day I was diagnosed and remember feeling how awful it would be to tell my son (daughter wasn’t yet born) that ‘Baba is sick’.

It was this that almost made me cry, and remains the single worst feeling I’d had. And now, three years later, I almost never even think about it at all.

My diet, and the supplements I take, have just become ‘the thing I do’. The questions I have to ask in restaurants or at people’s houses are treated like an allergy sufferer, that suits me fine, although if people do ask, then I tell them.

It’s staggering how many people there are out there with MS and how many lives ‘could’ be improved if the ‘word’ was out there.

 

Not to worry, I’ve a birthday party to look forward to, I hear the big theme this year is ‘Frozen’!

I have MS, it doesn’t have me.


One Year Later

March 26, 2013

Well, here it is, the one year anniversary diagnosis. Ava will be one year old in just a few days and I feel great – hopeful for the future, not just her, Mitra’s, Ava’s and Kian’s, but mine also.

In the year that’s passed, we’ve moved from Spain to the U.K., where we rented a house for 6 months and then finally moved into our new home.

There hasn’t been anything to report since the last scan I had in Madrid, at least not as far as the M.S. goes, anyway. Six weeks after we’d moved back to the U.K, we had all registered with
our local DRs surgery. Whilst there, I asked about the referrals system in the U.K. and was told that I’d be put on the register and an appointment would be made.

When I finally got the appointment letter, it was for the 25th February, nearly 5 months after I’d seen my local DR and requested the initial referral.

I drove through for the appointment and, expecting a long wait, I went ready with my kindle. I was checked in to the hospital around 10 minutes before the appointment and I’d sat down only
for a couple of minutes and I was then called through.

After the by now, regularish type exam where my reflexes, balance, hand-eye coordination were tested and finally, sensitivity, where the bottom of my feet were scratched (here’s a tip for
you, clean feet and non-fluffy socks), I started to recount the history that had brought me to this day.
This is I think, about the 10th time between the different DRs, hospitals, services and it’s amazing how blase you get to be about it all, whether it’s down to the repeated tellings, the coming to terms with it or something else.

Actually, because I’ve had no other symptoms, and because all I’m doing a a mild change to the diest and supplementing with some vitamins (previous posts), it’s almost too easy to relax overly much. A couple of days of not taking any pills here or there, the odd ‘taste’ of some fatty foods and a bit of being a touch blase
about it, made me wonder if I was perhaps being a little too relaxed.

I’ve not gone wild – you know, and had cheese or anything, but I have eaten a little red meat (some minced beef in a bolognaise) and a few bits of ham.
Devil.

The diet I follow recommends cutting out all red meat, not but because it is particularly bad for you, rather that it is very difficult to modulate how much saturated fat is being taken
in. I am still being fairly cautious though and occasionally have a carb free day also. My weight has re-stabilised at around 80kg too.

When we came back over, my weight picked up a bit from the 80kg to 82.5kg. This is probably because I wasn’t walking quite as much although in Madrid, I was having a three course meal every lunchtime.
It’s easy to draw comparisons between the provision of services (MRIs and Lumbar Punctures) within the private healthcare system (which I was part of in Spain), and the NHS state provision
in the U.K. In the U.K., the approach is a little different of course, and the in the main, rely more on treating when more obvious symptoms arise.
As the DR I saw in the Queen Alexandra’s Unit in Portsmouth said, “We don’t prescribe medication unless there have been at least two debilitating episodes in the past 12 months.”

In Spain, they’d suggested that any two episodes within 12 months would be “on the cusp” of qualifying for prescription medicines and additionally, under the private health system, follow-
up MRI’s were prescribed every six months.
Also, in Spain, I’d never had to wait for anything more than a week (apart from occasional mix-ups between appointment) and so booking an initial referral that would only take place five
months later, for something that’s listed as a chronic disease, was quite the eye-opener.

Well, I’m here now – better make the most of it.

I met someone else at work who’s also been diagnosed with MS (11 years ago). She said to me that I must remain positive about being an MS sufferer.

I only half-agreed as I feel that I remain positive so that I do not become a sufferer at all.

Anyway, feeling fit, looking pretty good for it too and assuming no change between now and my next appointment, this blog will probably be going dark for a year.
All the best to you all,

Geoff.


Follow up to latest MRIs

August 25, 2012

Almost like the proverbial buses, you wait ages for a blog and then two come along in short order.

Now that the ringing in my ears has finally faded away after the follow-up MRIs, it’s time to write about the subsequent analysis with the latest neurologist to see me, this time at the Rosario Hospital (or to give it its real name, Hospital Nuestra Señora del Rosario).

When I was booked in at the same hospital to have the MRIs done, I was also booked in for an appointment with Dra Herrera who is meant to be Sanitas’ number 1 DR for MS.

The new MRIs were also to include a different type of MRI, this one was a type of scan to determine if my MS symptoms (remember that MS is ordinarily diagnosed by exclusion, various different symptoms and test results combine to give the most probable cause) were caused because of a venal blockage in the veins draining the central nervous system.

If a blockage was found here during the MRI, it might have led to further investigation into whether or not a treatment plan based on CCSVI (Chronic cerebrospinal venous insufficiency), and unblocking the veins, or not.

It should be made clear that CCSVI is still undergoing other trials to test whether it is a suitable diagnosis and if the proposed treatment plan (a balloon stent to unblock the vein), risky enough anyway, was effective enough to warrant its use.

When I got to the hospital though for my 2pm appointment (and to collect the MRI results), I was waiting until 2.45 before I was called and told that Dra Herrera could still see me, but that she was very busy and they didn’t to leave me waiting outside for hours, so another DR was available instead.

Dr Casals introduced himself and we went into his office.
I described my case history for the fourth time (I had now seen four different Neurologists after the original MRIs) and as I had brought all the previous notes, scan results, Lumbar Puncture results and so on with me, I was able to pass them to him on request.

He decided to look at the oldest MRIs without reading the medical reports so that later, when he compared those with the most recent ones, he’d be able to ascertain for himself what the conclusions were, and then see if the medical summaries provided, matched up with his medical opinion.

He went through the old scans and then followed up by examining the latest ones, and then he seemed to look a little concerned – I asked him what the matter was.
    “Well, it looks like there is a new active lesion here in the new scans that wasn’t in the old ones”

Hmm, not a great feeling – partially because it was almost like being diagnosed with MS again, and also because I had been so convinced I was feeling better and following a suitable treatment plan (vitamins/diet), it felt like everything had been undone in one minute.

Dr Casals went back to the older scans.

    “Ahhh, found it.”, he said. “I must have missed it on the first pass. Well, if it had been a new lesion, that would have been bad news, however, it seems to be the previous one which might still have been active in the last three months so…there’s nothing to worry about.”

I removed myself from the floor and re-seated myself.

Hey pop-pickers, how’d you like a look at my Axial Flair MRI scan…
Hmm, not the most endearing pick-up line but here it is:

 

And I think this one is the Coronal T1 image although I’m not too sure about that.

Sure beats offering if someone wants to pop up and see your etchings.

Anyway, we then chatted for a while (in English, mercifully), and he viewed the low number of lesions and their small size, as actually not being drug-worthy, in that, interferons and other drug based immune-system suppressants, are too hard-core with too many risks to the immune system.
Whilst he wasn’t overly impressed with the idea of either CCSVI, nor diet approaches, he did also acknowledge that, whilst treatment ASAP was best, it had to be weighed against risks/current disease phase/quality of life.

Knowing I was moving back to the U.K., he suggested the following:

  • that I should try to get to an MS clinic as soon as possible, using the work & results obtained in Spain – since the groundwork had already been done, there’s no point in waiting on referrals from other DRs in the NHS, in order to eventually get seen for a first MRI.
  • to get a new scan in the U.K. within about three months, along with new multi-mode visual evoked potential (VEP) tests.

These new tests will be used comparatively with the current two older sets of results to track disease progression, or hopefully, lack of progression.

So, in summary – nothing much has changed since the last scans done along with the original diagnosis. I have to simply carry on being awesome (San Diego…Anchorman), be aware of any changes and keep myself informed.
When I get to the UK, get hooked up with an MS clinic and carry on from there.

Oh yes, and meanwhile, I’ve now lost 7kg 😀
What’s that? “Oh hello waistline – where’ve you been all my adult life?”

So, assuming nothing happens meanwhile, my next blog will be from the not-so-sunny, U.K.
I can hardly wait…


    Five months later…

    August 12, 2012
    Wow – where did the last five months go!
    Time for a progress report and a minor rant aimed at Sanitas, my private health-care provider here in Madrid .
    First the good news – almost no change at all – the diet part continues to work for me, and now I’m about 7kg lighter than where I was at the start of March – the summer jeans I was wearing seem a little tight in the various curvy bits I’ve still got left, although I realised today that they are a 32R, meaning I have finally dropped a 2″ waistband size (girly shriek of joy).
    Even though I’d cut out as much saturated fats as possible and all milk-based dairy (I still eat eggs), I’m not actually feeling like I am missing out on anything – I’m eating more seafood and using soy milk/yoghurt with my breakfast and almost never experience any cravings for Chocolates, Ice-creams, Pizza’s, Pasta foods with bechamel or cheese…Lemon-Meringue pie (actually, I CAN have that, as long as the base has no butter or margarine in it).
    Mitra, my wife has been experimenting with baking with olive oil and we’ve had variations on carrot cakes and lemon sponges and so on, which have all been great too.
    So, no further symptoms in 5 months, feeling great, have at least as much energy as I did years ago (handy for chasing our toddler son Kian around and will be useful for when our baby daughter Ava becomes more active too).
    Is this the bit where I say I am vigorously touching wood…I mean, I know how that might sound to the immature amongst us…
    Moving on then.

    Bad news?
    Healthwise no, although I’ve been through a few Sanitas screw-ups recently.
    Sanitas are the Spanish version of BUPA – the medical care received has been excellent but the administration side, less so.
    1. When our daughter was born earlier this year, the DRs wanted to monitor her heart and chest as they thought they detected an issue with a heart murmur and possible liquid in her lungs.To have this done on Sanitas should have been fairly straightforward.I called Sanitas because permission for the monitoring has to be sought first.DENIEDWhy?Well, your daughter is not yet a member of Sanitas.Wait, what? She’s just been born, she’s in the hospital and the DRs want to give her a couple of extra scans.Sorry, can’t be done.Right, how do I make her a member of Sanitas.You have to call your work contact (it’s 7pm). Get them to agree and e-mail us. We’ll process her application and in a week or so…
      Because I live in Spain and the UK contact to apply for Sanitas membership lives in the UK , I wasn’t going to get anything done that day.
      Nor the next.
      My company had done everything they could, e-mailing and calling multiple times to their contact in Spain/Sanitas. Later we discover that the original Sanitas contact had left and our company hadn’t been given new contact details.
      Ridiculous.
      Ok, eventually all sorted and 2-3 days after she was born, Ava had been checked out and everything was fine.

     

    • In the previous 2-3 years, we’ve gone for pregnancy checks at Sanitas ‘enabled’ gynaecologists, and gone for blood tests, vaccinations…and about 4 or 5 times, our Sanitas card has been declined, meaning we had to pay first and then tedious form filling later to claim a refund. These problems were again down to Sanitas’ administration. Because they sent the bills to our company late (2 weeks or more), they weren’t paid in time for Sanitas – who clearly expected the bills to be paid one week before the invoices had been sent.And now, more recently…
    • I wanted to have a second set of MRI scans done before I leave Spain so that I could understand if the MS has progressed or if there were any active or even new lesions so I would be fully informed before I went back to the UK and decided if a change in treatment approach was needed or not.I saw a Sanitas neurologist who wrote a prescription for me – not only for the standard MRI, but also an Angio resonancia – the idea behind this second type is to see if part of the symptoms could be down to a blocked vein (in order to investigate CSSVI).I took this prescription to the front desk – they basically print it and ensure that the correct procedures are booked.I phoned sanitas to check which clinics would provide these scans and that were accepted by the Sanitas group – and so an appointment was made at the Clinica Ruber.I left work early to be on time. When I checked in, they told me that the Clinica Ruber was not contracted to provide it to Sanitas.If true, then why didn’t the Sanitas department I called, tell me this? Why recommend a clinic to go to that is not actually contracted to provide the service.H

      a – wait, there’s more.
      Two days later, I received an e-mail from Sanitas with a new appointment to see the Neurologist.Again, I leave work early – when I arrive at the Neurology department, I am told “No, you do not have an appointment today“.
      Avoiding stress is apparently a GOOD THING when coping with MS.

     

    I make a new appointment – I arrive, speak to a different Neurologist and repeat all the previous details again. He completes a new prescription (this time on two separate forms).

    What I must do now:
    a). phone a new number,
    b).
    read out the prescription code and they will in turn, feed me back an authorisation code – this authorisation code is needed for me to then call a different clinic to make a new appointment.

    But of course, this being Sanitas, nothing is ‘that’ easy.

    I phone the first number and read out the prescription code and then read out the name of the two types of scan require. Sorry – but we cannot use those numbers – the prescription codes are for Digestive disorders only“.

    Sure enough, reading the header of the forms shows 0034 Digestivo.

    Some sheer bloody mindedness later, results in the Sanitas person on the phone giving it the old “Sigh, I suppose so…” and so I got my new scan dates booked.

    I am going there tonight (09 Aug) – let’s see!

    YES – SUCCESS!

    Appointment went very smoothly – although the imaging machines were so loud, my right ear was still ringing the next day.
    Must remember to take ear-plugs next time.

     

     


    Quiet News weeks

    May 21, 2012
    Approaching now 3 weeks since my last confession blog post, I was confident that there would be plenty to write about.
    Oh – I suppose I’ve given away the purpose of it after all, in that there isn’t a lot to write about that’s changed since the end of April.
    My wife is happy about this. Not because she was concerned I was taking too much time with the blog, but rather that the “no news is good news” means that nothing sinister has happened (crosses fingers, touches wood, dodges black cats and inclined ladders).
    All previous symptoms have gone completely (ok, the numbness…) and I continue to lose weight. I’ve now lost around 6kg (actually, about 6.5kg but I seem to maintain a ‘floating variance’ of about .5 kg) and have started using some weird vibrating dumb-bell style weight gadget. It says only 6 minutes a day are needed to achieve the same results as lifting a bison several times a minute.
    Whatever is it I am doing, so far, it’s working. I’m still feeling on top (better than the 2005 Geoff). I did have a bit of flu recently (the last time I had it, I was left congested and then I noticed the numbness), and this time, nothing else happened.
     
    So then, Mitra is happy – nothing has happened and there is nothing to report.
    Research-wise, (not mine), it seems to be borne out that early diet/medical intervention on MS has a vastly superior outcome on prognosis, compared to waiting for several attacks to have occurred.
    One of the suggested approaches to self-management of MS, is meditation.
    It’s not something I have any experience of, even now, although it’s highly recommended not just for MS sufferers in general, but, well, everyone.
    I think I have a mental hiccup with the idea of sitting in a room and un-thinking. Seems a little airy-fairy although I can easily read shelves full of books set in mythical, fantastical realms and as a result, still feel that magic, faith and honour all exist in the real world.
    I’d been sent a leaflet recently by Jon about meditation and, it all looks very easy. Maybe that’s the problem – I often feel that unless it’s difficult (almost self-sacrificially so) then I am not interested…I guess I should have been a Catholic.
    Anyway, I must try to give it a whirl (meditation, not Catholicism) – as I wrote to Jon also, I did go for a sort of a sit-down twice and was left with a placid and cooled sensation in my head and so maybe I was doing something right. Unless of course, I had left the window open and it was just a draught.
    Some of my wife’s family members are also studying a form of self-healing and energy transfer (not like reiki, but more apparently, to do with connecting to the universe), and they wanted to send some healing thoughts and energies to me.
    At the very least, there’s not exactly a financial commitment to sitting down, and I should be able to get myself 10-15minutes each evening, perhaps just by, you know, going to bed a little earlier.
    I must admit to having a bit of a passing interest in these ideologies anyway – Mitra (darling wife…darling…), had also trained to a level in Reiki and (inserts joke about laying on hands here) I definitely felt something on each of the times she’d tried to help me out when I had an aching knee.
    On a side note, I’ve been doing other reading into a drug called naltrexone. It didn’t start out like that, I mean, I wasn’t specifically looking for LDN. I was however, trying to keep up to date with what options are available if needed, in the future.
    Anyway, here is what wikipedia has for Low dose naltrexone.
    Without going into too much detail, this was a drug originally developed and prescribed for alcohol and opioid dependence. For this purpose, it’s dose (oral form) was typically around 50mg/day.
    In lower doses (of about 4.5mg), it is suggested to be beneficial in reducing MS symptoms, more typically around spasticity and bladder control, although has also been found to be useful for dizziness and other numbness/pain issues.
    Extended reading can be found here:
    This also contains a link to a free to download/share pdf book called Those Who Suffer Much, Know Much 2010. For internet decency’s sake, I won’t directly link the book here.
    The Multiple Sclerosis Resource Centre http://www.msrc.co.uk/index.cfm?fuseaction=show&pageid;=777
    “MS research is underway as well, with an Italian study enrolling 40 patients with primary progressive MS. The study will be reporting results shortly. A further RCT has finished enrolment at University of California, with 80 patients with relapsing-remitting MS randomised. The researchers found significant improvements for LDN over placebo in several mental health quality of life measures”.
    This appears to be the beginning of formal research into LDN in MS, and further trials are eagerly awaited by the research community.
    The website http://www.lowdosenaltrexone.org/ gives periodic updates on progress. There is also a gateway website where you will find many links to worldwide information, resources and events: http://www.ldnaware.org/.”
    Right – that’s it for now – hopefully, see you next time and in the VERY distant future…

    Geoff.

    Playing Catch-up

    April 25, 2012
    Up to now, this blog writing has been a bit of a breeze – mainly because I’ve been writing from memory of the major events that got me here, whereas soon, I’ll have to decide if the blog simply becomes a record of how I feel, or what I’ve learnt on a daily or weekly basis. I’ll probably keep on adding links to other people’s pages and latest research as that way, I can stand tall on the shoulders of giants.
    Anyway, it’s clear by now (thanks wife…) that I’ve already muddled some of the time-order – I thought it was within about 1-2 days after I got home that I’d had the brainwave about foodstuffs, etc.
    It turns out it was 6 days later, and only after my wife had already found a couple of interesting links…one of which I savaged somewhat a couple of blog posts ago.
    Additionally, I’ve completely missed going back to the hospital for the final course of corticosteroids, the subsequent check for tuberculosis reagent and…

    Truth be told, they were both very straightforward. I had already been allowed to go home on the Saturday and then on Sunday, our friend Farshid came over to collect me and take me to the hospital again for my final dose.
    Nothing out of the ordinary happened although I probably then made the follow-up appointment to see if I could get my Lumbar Puncture results, and also speak with the Neurologist about drug therapy. Meanwhile, there was again, the small matter of ‘administration’ (read bill paying) which hurt more than the injections.
    This order of events then fits in because, after the food/diet investigation I’d gone into, I then felt a little more prepared for this subsequent appointment with my neurologist.
    So, Sunday was taken care of, I’d had the corticosteroids, made an appointment to see the Neurologist and Farshid drove me home again.
    The next day I was back to the hospital – I had to get someone to examine the injection site where the TB reagent had been injected. As there was no reaction, I knew I was safe and I tootled off home.
    Luckily for me, the metro station (Mirasierra) next to the hospital is on the same line as my home stop (Ibiza), which is just 1 street block away from us. This is about 50minutes journey time and allows me to read books and listen to music. It’s not exactly meditation but I like it.
    We have other friends in Madrid, and one of them, Belen, knows a number of medical professionals. When she told them of my diagnosis and asked for suggestions about whom else I could speak with, the majority of opinions were to see Dr. Rafael Arroyo González who is based at another private hospital in Madrid, Hospital Quiron.
    He would also be interested in my MRI scans, which the Ruber International Hospital had provided me with, but at that time, the Lumbar Puncture results were not available.
    My wife had already made the appointment (her and Belen having cooked it up between them) and Belen (who is Spanish and speaks the lingo far better than I do) arranged to meet me there.
    Dr. Arroyo González is the Manager of the clinical Neurological unit at his hospital. He had me lie down and then I had to cross my legs (right over left) and then i had to try to draw my right leg up, drawing an imaginary line with my heel, up my left shin and onto the knee – this was then repeated for the other leg. And then the tests were to check my eye movement and depth of field. To do this, he raised his index finger and had me follow it left to right, by moving only my eyes, and then later on, I had to touch the tip of his finger with my left and then right fingers.
    I had no problems with these tests and I remember now also doing similar tests at the Ruber Hospital.
    Dr. Arroyo González looked at the MRI scans and read the medical histories – his view was that the eye shadow I’d had, might not have been indicative of MS, but he agreed that the lesions found and the current numbness (which had all but gone by now), were clinical symptoms of the MS.
    The discussion moved to drug therapy – basically the same discussion as I’d had with the Ruber DRs – but he did mention clinical drug trials that some of his patients were involved in suggested that oral drugs were starting to appear, negating the need (in some cases) for daily injections.
    I also told him of my approach to attempt via diet/supplements, to manage my symptoms and he seemed happy enough with that although wasn’t aware of the Vitamin D3, B12 or Dairy protein issues,
    Cheeky man – yes, I remember if he thought that, whilst avoiding fatigue was important for MS sufferers, did it mean that running a marathon was also something to avoid (I’d started recently thinking about doing something super fit and positive).
    Anyway, he looked me up and down…”I wouldn’t recommend it – not with your body”
    At least he qualified it later by saying if I got into some fairly serious training, then there was no reason why not…
    This must have been the male equivalent of not sweating much for a fat girl.
    On which wonderful news, we finished – I was invited to come back again with the Lumbar Puncture results and to keep positive – Belen and I left and that was that!

    Feelings, nothing more than…

    April 22, 2012

    A slight change in blog direction for this post.

    I had been talking a lot recently about various websites and approaches as regards drugs and diet therapy.
    This post will be a little more about feelings…and for a man, isn’t this supposed to represent a more fearsome approach than the slings and arrows of outrageous misfortune?

    Let’s see!

    Some of you might know that my father died of cancer a number of years ago. It started out as bowel cancer and spread. From which point, for a few years, I was checking what I’d left behind in the toilet bowl and on the toilet paper in case there were any tell-tale signs.

    It almost goes without saying (and indeed, you might wish I’d kept it that way…) that one day I spotted some blood on the toilet tissue.
    Logically speaking, the colour (bright pink/red) wouldn’t suggest anything cancerous at all, but when you’ve got into a bit of a cycle about these things (checking for symptoms), it’s all too easy to force ‘evidence’ to fit a diagnosis.

    Anyway, long story short, I got checked out and was told I had hemorrhoids. Which of course was a blessing, although the digital probing and air inflation of my lower intestical tract is a sensation I think I shall remember for the rest of my life.

    So why the gruesome story?
    Well, the MS is occasionally on my mind, whenever I get a leg ache, or twinge, or a new headache, or a feeling of dizziness. Recently I think I’ve noticed that if I sit sideways on to someone (like at a bar) and am trying to turn my head to talk to them, I get dizzy.

    Am I only noticing it now, or have I always had this? Can it be attributed to the MS?
    Sitting too long on one position, as you know, can result in numbness (before the pins and needles recovery starts) – and again, at times it is difficult to not immediately leap to a chronic self-diagnosis of a new symptom.

    I guess this though, is all part of the ‘recovery’ process.
    Basically speaking, I think I will need to give myself a little time to completely come to terms wiith the MS. I think it took something like a year to stop avidly checking for signs of bowel cancer – the mindset change being to sometimes check, rather than it being the thing you always ensure you do.

    Like checking for testicular cancer or (for men as well as women!) checking for breast cancer.
    I suppose the trick for these things is to be aware of them, rather than allowing them to almost being the principle reason for going to the bathroom.

    And so it will be with the MS – I’ll eventually re-learn that not all sudden twinges or feelings of numbness or headaches not based in tiredness, have anything to do with the disease.
    When I reach that stage, I can then be a lot more relaxed about it, and hopefully then, no false flag alerts.

    Another issue that’s only really come to light in the past couple of weeks, is a sort of trust issue.
    Not the usual type – I mean, nothing to do with partners and couples and so on.
    Instead, it’s dietary trust.

    Because I am trying to control the disease through diet, it means that I am pretty following it in an ‘all or nothing’ approach.
    This doesn’t make it so easy for my wife either of course, and having to ask the breadshop if they know if any dairy products were harmed in the making of their bread must be getting quite tiresome for them, almost as much as it is for me.

    Anyway, the only two times I have had dairy in the past four weeks, has been because of soup…
    Last night, we had guests over and part of the dinner was a type of thick soup called ‘Ash’. This normally is cooked with butter, and so my wife and her Mom substituted this with extra virgin olive oil (about the only fat I am eating).

    Another ingredient in the soup (added at the end) is something called kashk. This is a dried milk whey – that to me, tastes a little like vomit but does add a good taste to foods like ash.

    The problem is, I cannot have whey/kashk as it is a dairy product.

    Unfortunately, it was substituted by yoghurt – which I didn’t realise until I’d already eaten 4 spoons of it.
    Knowing that kashk is normally used, I ased if it had been used this time, was told no, so we used yoghurt…
    Errr…
    Anyway, that kind of spoiled the meal for me a little – I know, that sounds a bit precious doesn’t it!
    But for me, since the diet is about the only thing I’ve got (along with the vitmain supplements) to help modify the disease, it worrries me a lot to now have the thought of any dairy whatsoever.
    This meant also, no chocolate eggs at easter, showing just how seriously I am taking it all!

    The other time was again with a soup that had been made with milk – this one I had only had a single spoon of.

    The issue with dairy products is two-fold.
    One of course, is the saturated fat.

    The other is as quoted here :

    A number of cow’s milk proteins have been shown to be targeted by the immune cells of people with MS. Further injecting them into experimental animals has caused lesions to appear in the central nervous system of the animals. The cow’s milk MS link is further reinforced by the finding that certain proteins in cow’s milk mimic part of myelin oligodendrocyte glycoprotein, the part of myelin thought to initiate the autoimmune reaction in MS.

    This basically means that the immune cells rush to try to attack the proteins. These proteins are shown to be all but identical to those of (parts of) the myelin sheath, so when not attacking the milk proteins, these immune cells then target the next best juicy thing – the myelin sheath, causing
    inflammation and lesions. This inflammation response results in the attacks of which MS sufferers are particularly prone and susceptible to.
    Worth noting is that these various cow’s milk proteins also have been shown to exist in other mammal’s milk, apart from human).

    So, assuming that my diet was so incredibly low already in saturated fats, this wouldn’t have been the problem with the soups – the issue would have been a surfeit of active immune cells, specifically attempting to target these milk proteins. When none are found, the risk is that the immune cells then
    start to attack a part of the myelin sheath.

    Moo knew!


    A Researcher in Waiting – Part 2

    April 19, 2012

    It would appear in the blur of the first few days following diagnosis, that I have mixed some dates up and also forgotten that it was my wife who got me on the path of looking at foodstuffs.
    About 6 days after the diagnosis, Mitra sent me the following link:
    http://www.mscures.com/foods-to-eat.shtml.

    I have since had another look at the site and, now that I compare ‘some’ of the advice given there, to the sites contained in my ‘links’ area, I remember now why I discounted it so quickly.
    Apologies to the site owner – perhaps there are English translation errors also and of course, they need to make a living.

    Negatives:
    On the Causes page the author states:

    Hands or feet cold or OFF color or a stinging sensation in hands and feet Now here’s me thinking this was simply due to a poor circulation or pins and needles.

    Uncontrollable body jerks while sleeping

    Ever seen a dog dream? Ever dreamt you were falling or playing football or..
    For crying out loud – my mumbo-jumbo alerter was screaming at me.

    JUST A FEW OF THE JOYFUL SYMPTOMS OF ANIMAL FAT AND HYDROGENATED OIL, raw egg (yellow part) IMPACTS!!!- U U U CAN CHANGE AND HEAL U FOREVER, IF U DECIDE 2!

    Who writes like this? U U U?? If U decide 2?
    Gnnngghhh – the dreaded txtspk.

    So, red (reder? seriously?) ears show you have an imbalance…from time to time. I used to get that whenever I spoke to a woman I fancied.

    “MYTH QUESTION: Why R 75% of all MS patients women? Because they lick the spoon or fork, (gravy samples, sauces made with animal drippings) when they cook!!!
    That simple!”

    Hmm, licking the back of the spoon gives you MS apparently – in which case, why aren’t all the famous male chefs publicly acknowledging their disease. Why doesn’t Nigella Lawson – surely the most famous spoon-licking chef have an issue with it in particular? (note to Nigella, please, keep licking).

    MYTH QUESTION: Why R their ZERO out of 1.5Billion Chinese without MS, Parkinson’s, or Alzheimer’s in China? Because their diets R not based on animal fat, hydrogenated oil, butter, mayo, etc.

    Patently not true:

    http://www.mult-sclerosis.org/facts.html
    MS is predominately a disease of temperate latitudes and of the western hemisphere. Principally, it is a disease prevalent in Europe, North America, Australia and New Zealand. Although MS is found in Japan, China and some other temperate, eastern countries, it is very much rarer than it is in the West.

    http://msj.sagepub.com/content/15/6/655.abstract

    Results
    In China, the first case of MS was described in the medical records from Xiehe hospital in 1926, and the first autopsy case of MS was reported from Huashan hospital in 1957. Although reports on MS based on the information from hospital case-series have been increased gradually in the recent decades, there is no national surveillance on MS frequency in the population and population-based surveys on MS were few in China. Generally for Chinese patients with MS the mean age at onset of MS is around 30 years, with a few cases younger than 20 years; the most frequent site of the lesions in the central nervous system, based on the clinical symptoms or signs, is the spinal cord (usually more than 60%); there are few patients with a family history of MS; almost all patients are treated with corticosteroids. Reported prevalence rates of MS from population surveys in China are rather low (1–2 per 100,000) and higher in females than in males, which are comparable with the results from other populations in Asia.

    So, we’ve proven that there is MS in China, although prevalence is (in keeping with other Asiatic populations) low.
    Now this is just dangerous clap-trap!
    There’s a name for vitamin overdosing – Hypervitaminosis
    Here is an article for Vitamin A overdose

    Effects include
    • Angular cheilitis
    • Birth defects
    • Coarse bone growths
    • Excessive skin dryness/peeling (desquamation)
    • Hair loss
    • Intracranial hypertension (see Idiopathic intracranial hypertension[1])
    • Liver problems
    • Premature epiphyseal closure[2][3][4][5][6]
    • Reduced bone mineral density that may result in osteoporosis
    • Skin discoloration

    Death?
    ooh yes!!

    The liver of certain animals — including the polar bear, seal,[12] walrus,[13] and husky – is unsafe to eat because it is extraordinarily high in vitamin A.
    This danger has long been known to the Inuit and has been recognised by Europeans since at least 1597 when Gerrit de Veer wrote in his diary that, while taking refuge in the winter in Nova Zemlya, he and his men became severely ill after eating polar bear liver.[14] In 1913, Antarctic explorers Douglas Mawson and Xavier Mertz were both poisoned (and Mertz died) from eating the liver of their sled dogs during the Far Eastern Party.[15]

    Comparative safety statistics

    Death by vitamin poisoning appears to be quite uncommon in the US, typically none in a given year.[2] For example, in the United States, overdose exposure to all formulations of “vitamins” was reported by 62,562 individuals in 2004 (nearly 80%(~78%, n=48,989) of these exposures were in children under the age of 6), leading to 53 “major” life-threatening outcomes and 3 deaths(2 from Vitamins – D and E; 1 from polyvitaminic type formula, with iron and no fluoride).[3]
    This may be compared to the 19,250 people who died of unintentional poisoning of all kinds in the U.S. in the same year (2004).[4] In 2007, 58,000 exposures to various vitamins and multivitamin-mineral formulations were reported to poison control centers, which resulted in 17 severe reactions and 1 death.[5]

    The final issue for me, was the following:

    CALL (their number) TO HEAR THE CAUSE AND CURE FOR YOU
    Only $34.95 (flat fee) (My personal phone number will B at the end of this voice message.) Either I or one of my personally trained Associates will call you back within 10 business days and answer all your specific questions. 100% MONEY BACK GUARENTEE!

    Any site that wants my money and can’t be bothered to perform a spell-check just puts me on spam alert anyway.

    Positives:
    The site got me started on the principle idea of diet and the role that saturated fats had to play.
    Umm

    Moving swiftly on…

    On the previous post, I had mentioned discovering the Swank Diet website.
    This was full of neatly presented, documented and backed up research and interesting conclusions. Whilst the site design appears to be a little old, and ‘testamonials’ seem to have stopped in 2005, I felt I was on the right track.

    Later on, through following what seemed like 50 other links, I arrived at this site: http://www.msrc.co.uk/index.cfm.
    This seemed to be even more useful in that it is more up-to-date, had a latest MS research and news RSS feed and seemed to be supporting (in general terms) the diet based on the Dr Swank findings.

    The msrc site doesn’t actually advocate a diet – they DO however provide a community dedicated to the Best Bet Diet
    Related to the dietary aspects, the page BBD The Science – Part 3 “The Paleo Diet and Multiple Sclerosis” ontains the following extract from a public presentation by Dr. Loren Cordain of Colorado State University on the topic of “The Paleo Diet and Multiple Sclerosis”. Dr Cordain is a leading researcher in the field of the roles that various nutritional factors play in chronic diseases such as MS.

    Activation of Myelin-Sensitive T cells? Grains! Legumes! Dairy!Once the lectins and their passengers are across the gut barrier, the transported food and gut bacteria protein fragments have the potential to activate the myelin-sensitive T cells by way of molecular mimicry. Furthermore, some lectins such as tomato lectin also have the capacity to act as immune adjuvants. This means they greatly stimulate the immune system such that the encounter with the lectin-transported proteins is much more likely to result in T cell activation. If that was not enough, the lectins also cause the upregulation of various proteins associated with the blood-brain barrier (adhesion molecules, MMPs). This action significantly facilitates the entry of the activated, myelin-sensitive T cells into the central nervous system where they lead the attack on myelin. We now have the answer to the question of what causes the frequent activation of myelin-sensitive T cells. It is the daily ingestion of lectin-containing grains and legumes along with other potentially problematic foods such as dairy.

    So now there are at least two (serious and well-researched) websites advocating links between saturated fats and the spread of MS. The msrc linked Best bet Diet, ALSO appear to lay part of the blame on certain lectins as contained in Grains, legumes and dairy.

    The sites I have linked to on the right, are completely free. You can (if you wish) buy the supporting books but they are not necessary.
    There are recipe ideas on both, notes and research links regarding vitamins, drugs, holistic therapy, health retreats and so on.
    The also have support forums and you only need to register with an e-mail address. if you are using hotmail, you can set up an alias address – meaning that your ‘real’ e-mail address is hidden, but mail delivered to your alias, still arrives at your inbox (useful for maintaining an e-mail address for shopping websites, another for journals and another for subscribing to blogs, like mine…)
    Follow this link for instructions: http://mail.live.com/?rru=createalias

    ok – that’s most of the dry and heavy stuff out the way I think.
    Next post – The whats & whys of my chosen treatment plan.


    A Researcher in Waiting – Part 1

    April 18, 2012

    Following on from the NICE and Easy post where I’d sort of found out that, according NICE, Interferon wasn’t going to be offered in the UK, I felt that couldn’t be the end of the matter and so I widened my search criteria for treatment plans.

    Meanwhile, although I still had some mild side effects from the corticosteroids (and one more course to go), they were slowly but surely, helping to alleviate the facial numbness. So much so, that by the end of the 2nd day (the evening I had got back home), the outside of my nose felt relatively normal, and my left cheek felt strange only when I pressed or tried to move it with my hand.
    Since I’d never suffered any type of palsy, I was reasonably happy so far with my progress.

    I spent the evening chatting with my wife and sister (I should point out that my wife and my sister are NOT the same person – my sister was over to visit and offer support). I was coming more to terms with the MS diagnosis, but even then (as now, as I write this), I didn’t feel that MS was going to be a deciding factor in my life if there was anything I could do about it.

    Now, I don’t mean I suddenly discovered some latent grim determination and fortitude…I just didn’t feel that MS was the thing that would be defining my life. Well, apart from writing a blog and changing my diet and getting vitamin supplements and reading loads online and ordering books and…
    I mean, apart from all that, what have the Romans ever done for us I wasn’t really thinking about the MS at all. I was convinced I would end up doing a lot of different things because of it, but that it would just become an aspect of life and hopefully, easily ignored if treated right.

    And now a sensible word of caution!
    I’m not a DR (gasp) – and if anything written anywhere in this blog (at least by me…) stirs you into some sort of action, please understand that it still is your decision.
    I’m not sure I am intending to give advice as such, but at least make you aware of other options.

    Also (as mentioned already), I’ve not started to take any MS modifying drugs. I am however attempting to control disease progression through diet and vitamin supplementing.
    To understand more about those, please see the links on the right-side of any of the blog pages, particularly:

    Also, I’ve only (at the time of writing) been diagnosed for a month – so I’ve got a while to go yet before I begin to understand if my approach is working.

    Right – Internet time.
    I can’t remember exactly what I was searching for, nor what I typed into the search engine, however, one of the very first links I found (might have been a blog site!), ended up pointing me to http://www.swankmsdiet.org/.
    I don’t want to copy/paste reams of stuff from other websites but here is something very interesting:

    The rise of MS in recent decades has mirrored the increase of highly saturated animal fats in the Western diet, which caught the attention of Dr. Roy L. Swank, Ph.D. He researched and devised what is now known as the Swank MS Diet, which he first introduced in 1948.
    60 years ago Dr. Roy Swank discovered that a low-fat diet, very low in saturated fats and polyunsaturated oils, helps MS patients live healthy and productive lives. Also low in red and other fatty meats, high in grains, fruits and vegetables, it is simple to follow and in many cases alleviates chronic symptoms. Some of his very first patients are still ambulatory and leading independent lives thanks to following Dr. Swank’s regimen for the last half-century.

    For an understanding of why the diet appears to offer a great deal of hope, allow me to put the following quote from wikipedia (http://en.wikipedia.org/wiki/Swank_diet):

    Research

    Swank’s research on 144 patients over a 34-year period was published in The Lancet (1990). The study showed that those who followed the diet had not shown any significant deterioration of their condition over a 34-year period, while those that did not follow the diet did significantly deteriorate over the same period.

    Interesting? I certainly thought so. At which point, I wondered how much protection Interferons might offer (it should surely be at least as good as that apparently offered by the Swank diet).

    Quotes that follow are from various sites such as wikipedia (backed up of course by the reference notes) and also http://www.mstrust.org.uk/atoz/betaferon.jsp

    Interferon beta 1a (known as Avonex, Rebif or CinnoVex)
    While these drugs improve certain diagnostic test results they do not cure MS and many patients report no perceived improvement and serious side-effects that substantially reduce quality of life. Over time, physiological tolerance and reduced effectiveness can occur due to the development of antibodies to the drugs and side effects may persist even after discontinuation.

    Interferon beta 1b (known as Betaferon (UK), Betaseron (North America))
    Betaferon is a disease modifying drug, licensed for relapsing remitting multiple sclerosis and some people with secondary progressive MS. Studies have shown that on average Betaferon reduces the relapse rate in people with relapsing remitting MS by about a third and also reduces the severity of those relapses that do occur.
    Patients taking Interferon beta-1b may develop neutralizing antibodies to the medication.

    Glatiramer Acetate (Copolymer 1, Cop-1, or Copaxone)
    A 2004 Cochrane review[4] concluded that Glatiramer acetate “did not show any beneficial effect on the main outcome measures in MS, i.e. disease progression, and it does not substantially affect the risk of clinical relapses.”
    A 15-year followup of the original trial compared patients who continued with glatiramir to patients who dropped out of the trial. Patients with glatiramer had reduced relapse rates, and decreased disability progression and transition to secondary progressive MS, compared to patients who did not continue glatiramer. However, the two groups were not necessarily comparable, as it was no longer a randomized trial.
    More serious side effects have been reported for glatiramer acetate, according to the FDA’s prescribing label, these include serious side effects to the body’s Cardiovascular System, Digestive System (including Liver), Hemic and Lymphatic System, Musculoskeletal System, Nervous System, Respiratory System, Special Senses (in particular the eyes), Urogenital System.

    From this website, the comparative costs of use seem to be around $1000 (it’s a US website)
    http://onlinelibrary.wiley.com/doi/10.1111/j.1524-4733.2004.75007.x/full

    You can perhaps understand why I was keen at least to explore as many other options as I possibly could before starting any of the possible drug treatment plans.
    A further consideration of mine was, what if the Spanish system allowed me to take the Interferon type drugs, but these were not supported/prescribed for use for me when I got back to the UK?
    Who on earth would want to start a course of medication and just as it was (potentially) building up a protective element, then be forced to stop taking it.

    No – this wasn’t going to be suitable at all.

    Of course, it must be understood here, that I am not completely dismissing these drugs out of hand. They are still on the table I suppose, as an eventual option, but considering the mildness of my symptoms, I felt that heavy duty drugs were the old sledgehammer/nut problem. Over the top for now and, according to what I had read, they could seriously compromise my quality of life (which at this time, is really rather good).

    Hmm – more reading required.


    NICE and Easy.

    April 17, 2012

    So now – five posts down and…well, more to come – I think it’s time for a quick recap.

    Having had two symptoms (attacks or episodes) that indicated a neurological issue, and then following the results of an MRI, I was diagnosed as having MS.
    This diagnosis around 2nd March 2012, took place approximately 7-8 months after the first attack.
    Subsequently, I’d had discussion with the neurologists about drug treaments, but had been given a couple of weeks to think things over as the initial results from the lumbar puncture were not yet in.

    The “glass half-full” news, was that my symptoms had been very mild and were sensory only. This mean I had not experienced any difficulties with movement nor spasticity. And since everything was so mild, and because I was already of a quite senior age (MS normally being diagnosed between the ages of 20-40), it meant based on normal life expectancy, I’m not likely to be any more inconvenienced by MS than I would be for normal advanced age in the future (this is by following average disease progression trends).

    As mentioned, it’s now the sixth post, the previous ones covering the original symptoms and stay in hospital, as well as the first two (out of three) doses of corticosteroids that work as anti-inflammatories.
    They were starting to work and as a result, the swelling that had caused the lesion I had affecting the
    trigeminal nerve (resulting in the facial numbness), was now easing. This meant I was re-gaining the sensory sensitivity and the numbness I’d experienced was slowly fading away.
    Some side effects of the corticosteroids, and ones I hadn’t been warned of, were palpitations and also facial redness.
    This came as a mild surprise when I came home and about an hour later, face beetroot red and a hot flush later, I thought I might be having a heart attack.
    So, instead of settling down, I ended up researching the role of these drugs on subsequent side effects.
    The same (ok, I can say mild now) mild symptoms happened a few times over that Saturday and the following 2-3 days and are quite common.
    I was now back home after a day and night in the hospital – time to take stock and do a power of reading and research.
    I’d been in touch also with my work who’d been quite understanding and put me under no pressure at all to return to work before I was ready. I am a UK citizen but I am currently working in Spain on behalf of my UK employers (NATS – http://www.nats.co.uk/). By the time I return to the UK, I will have been living and working in Spain for four years, during which time, my wife and I have also had a family (Kian and Ava).

    It was now Saturday – I’d had two days to consider the new about MS. As I mentioned to my sister, Lee who had come over that day (pretty much dropping everything to do so, cheers), I felt as if I was an observer to myself. It seemed like I had been sitting in the back seat of the car whilst watching another
    version of myself doing the driving.
    I felt it was now time to read up on what MS was, particularly RRMS (Relapsing Remitting Multiple Sclerosis), how it might be triggered, treated (or at least managed) and long term prospects.

    First up, just to confirm the drug based approach as suggested by my neurologist, I decided to look into Interferon and also if it was seen as a supported (prescription) medication in the UK.

    Online Research – Not so NICE?
    Having been told by the Consultant Neurologist at the Ruber International Hospital in Madrid that the current standard treatment for RRMS is Interferon beta 1b, I decided to investigate the clinical practices and proposals for drug therapy in the United Kingdom where, in 7 months time, I would be living again.
    This means it would be a good move (I think) to investigate if the same drug approach is used in the United Kingdom.
    In the UK, NICE is a department that publishes ‘guidelines’ for medical authorities. If NICE say a drug therapy or disease approach is recommended (cost effective equations based on Quality Of Year of Life or QALY), then NICE issue a guideline to health authorities that these are recommended drugs to be made available to patients.
    Here is a statement from their website (correct as of 17 April 2012)

    Recommendations on drugs
    NICE’s technology appraisals programme is designed to ensure that people across England and Wales have equal access to new and existing medicines that are deemed clinically and cost effective, reducing the risk of a postcode lottery of care.

    Of course, if NICE do not recommend, or are tardy in finalising their recommendations, then it falls to the patient to either completely or partially self-fund the treatment, based on the QALY equation, because without the NICE guidelines, Health Authorities (I understand) are not likely to provide the treatment at all.
    Moving on then, I searched the NICE website for details about Interferon beta 1b treatment for Multiple Sclerosis. Again, the following quote taken directly from their website says:

    “Technology appraisals, TA32 – Issued: January 2002
    NICE has very carefully considered the evidence about the effectiveness of these drugs in people with MS and how much they cost.”

    and

    “After considering all of the evidence, including the views and experiences of patients, NICE has issued the following advice:
    A recommendation to use these medicines (beta interferon and glatiramer acetate) cannot, presently, be justified, taking both benefits and costs into account.
    “The Department of Health and the National Assembly for Wales, along with the manufacturers of the beta interferon products and glatiramer acetate, have been asked to consider what action could be taken so that the NHS could obtain these drugs in a way that would be cost effective
    Note: The planned review date for this guidance was November 2004. In December 2004, NICE proposed that the review be deferred until November 2006, pending data from the Department of Health risk sharing scheme. Following consultation, NICE has decided to proceed with this proposal.”

    As I stated above, this is from their website as of 17th April 2012.
    In summary then, neither of the two most commonly recommended or used drugs in the world for RRMS appear to be endorsed for cost-effective reasons in the UK (actually, England and Wales – I think Scotland pays heed to the guidelines but is not controlled by NICE in quite the same way).
    I’ve subsequently heard that Interferon IS used, but it’s down to individual Health Trusts – however, at the time of reading the NICE recommendation to NOT recommend Interferon, struck me as a bit of mental blow.
    Remember, at this time, recently diagnosed and feeling quite vulnerable and I suppose, not a little anxious about what the future would bring, finding out that the proposed drug wasn’t even supported in the UK was a bit of a shock.

    However, all clouds have a silver lining.

    Next Post? yes i think so…