Author: 6mandi

Here I am gulping oxygen having left home only 10 minutes ago.  There the three of us were, digesting lunch and discussing Christmas arrangements and Pip, ever efficient, suddenly spotted from the diary that I was meant to be at the MS centre at 2.30.  And here I am with a perfect opportunity to wish you all a very Happy Christmas.

Two years ago, this Centre was the only place that offered me some help, support and guidance after the consultant at the Chaucer delivered the diagnosis that has completely changed my life.  You will have gathered from my blog, I hope, where I have got to along this desolate path I now try to negotiate.

Although, it is not so desolate as all my friends and relations are being so kind and supportive and I really do appreciate and am so grateful to you all, for what you are doing to help me.  Thank you, thank you.

Having got to a significant point in the year, it is easy to make the comparisons of what I now cannot do, a year on.   How far I can walk;  how long I can stand still;  how long until I have to lie down;  the art of assessing and then juggling what I hope to achieve in a given time;  it all takes some effort and I freely admit that there are days when I’d just like to stay in bed all the time as it is bloody hard work, making that effort.    The strength in my body is sapped.   Opening a jar of marmalade is impossible if the lid is too tight.  Playing the piano is something I can only do for about 10 minutes.  Moving a box that would not have phased me a year ago, is impossible now.  It’s not just my grip that’s gone (twisting a lid is marginally easier than holding a fork) but my muscles are hardening and as a consequence becoming redundant.  Hence the name “Sclerosis which is the stiffening of a structure, usually caused by a replacement of the normal organ-specific tissue with connective tissue. The structure may be said to have undergone sclerotic changes or display sclerotic lesions, which refers to the process of sclerosis.”

What I am waiting for now is the results of the MRI I had on the 6th December.  That will take 6 weeks apparently and, having rung the Neurology department I understand the results of all MRIs are being subbed out of the hospital to another outfit to be reported upon.   Is this an efficient way for a hospital to be run?  And I really don’t get why London hospital doctors don’t like the MRIs theprovincial hospitals produce and vice versa.  In fact they can’t even access them not only from a centralised database but the software is incompatible going from one health authority to another.   It’s a bit like the software of my immune system is incompatible with my body, my being.  My immune system is going to slowly eat me up and having gobbled up the muscles on my limbs and torso, then what does it turn on?  Eyes and other vital organs will have also been annihilated en route:  so what will it turn on next?

The pain control is …… being controlled!  Under doctors orders I am reducing the Pregabalin very, very slowly in order to transfer back to the Gabapentin which seemed to suit me better, back in February.  Of course something may have changed and my system may not tolerate the Gabapentin…..we will see.  But that seems to be going well. At the moment.

So I am living for the moment and trying not to dwell on what will happen to my body and mind.  I will fight the battle as well as I can, and the friendship and support I get from all of you really does matter and is massively appreciated.

By the end of January I may have the MRI results – what I have to hope for is two new lesions to qualify for Ocrelizumab (Ocrevus).

Kick on…..

The usual apologies for the break in communication.   But I am sure you realise that life has been rather chaotic with the house move.   But it’s done.  Not an experience I would wish on anyone when in the predicament I’m in and has only been achieved with an excellent removals team and lots of help from lovely, generous  friends and family who all performed wonders in their own ways.   I need to remind myself this blog is not about house moving although that has made an impact on my situation so it’s hard to not link my current state with that.  But here goes…..

I suppose my main preoccupation (besides packing boxes) has been getting the drugs sorted out.  That’s the prescription ones.  My penultimate visit to the GP in Faversham flagged up I was way over the maximum limit of the Pregabalin.  600mgs is the maximum dose per day and I had read it as per dose.  But, even on 1100mgs per day I was still in pain and, on strict instructions to come down to the maximum limit, I managed to start doing that a couple of weeks after we had moved (there was quite enough trauma going on without juggling dosages and different pains to try and overcome).  A month later I was able to report back to the surgery that I was down to 300mgs twice a day.

Having moved we needed to find a new surgery as we are too far away from from Faversham to be registered there.  This was a perfect excuse to register with a private GP who is in the next village from where we are now.   So, to cut a long story short, I saw him 6 days ago and I’m now on a cocktail of Pregabalin and Amatryptaline at night (as well as the CBD).  The first night was brilliant and I was even up and about and doing things by 10am the next morning.  But, I’m already recognising the desire and need to push up the dose.  Sounds familiar?  But to be seen by a physician who gave me more time than I was able to make use of, and look at me as a whole person as opposed to just what MS is doing to me, was really comforting.  

Enough of the pain killers;  onto the strategy.   About a month ago I saw my new NH consultant in Canterbury, Dr Hari Krishnan.  He immediately picked up on my desire to try the Ocrelizumab (the only drug suitable for PPMS and not exactly proven yet).  I know I need new lesions to qualify for it and after another MRI, which I had yesterday, I will know if I do have any new lesions.  So that’s where I am.  

No, here is where I am.  In bed, in my new house and loving it here.  Yes, we have lots to do, not only to make it suitable for my changing needs but to rescue it from several years of neglect.  The garden is rather like a jungle but already looking more under control and paths, walls and even flower beds are emerging from the nettles and brambles.   We are now safely fenced in (or rather Huffy is), and the men who did that cleared a lot of the thicket and fallen down trees which made an excellent start on the other clearing that needs to be done.  The annexe (now christened The Nesting Box) is being renovated and the bathroom is being fitted out with everything a wheelchair user needs.  With regards to the actual house we are changing our minds daily about what we want/need to do and will wait with interest to see what the architect comes up with.   In all honesty the only thing we are really missing is a boot room/utility/scullery area which we hope to carve out in one corner of the house whilst maybe pushing the kitchen out a little further.  We will see.    But this is NOT a blog about moving house.

I will not be so tardy with my next post, but I am sure it will be after Christmas and perhaps I’ll have some news about Ocrelizumab.  A New Year and maybe a fresh start with a new drug.  Who knows.

 

I wake at 3pm.  There is a sharp pain in my right calf.  I would like a knife to pierce the skin and perhaps go deeper into my calf as it is an exquisite sort of pain.   It’s not purely exquisite though.  At the same time it is as if boiling water is being poured onto my skin.  At the same time, at the top of my r arm there is a similar sensation and a red hot searing pain down my right arm going round to the top of my hand and cramping and tightening my ring finger and little finger accompanied by ants crawling all over my skin in that area.  There is a tight band around my head, a bit like where a hat band would go but also a pressure on my eye balls.  Both of them, not just the right.

I am aware that quite a few weeks have passed since my last post and thank you to those of you who have been in touch to make sure I’m still alive.  I am.

A lot has been happening on a practical front in that we now have a date which we are working towards on the house move.  And it looks like its only a month or so away.  Contracts have not yet been exchanged so anything can happen but our purchasers look pretty solid and having spent a fortune on surveys etc I think it unlikely they are going to change their minds.  Unless we do.

It is said that moving house is up there with bereavement and divorce as one of the most stressful things.  Which perhaps is why my symptoms have got so much worse this summer.  My distance and stamina are severely compromised and the latest pain killers are not as effective as they were initially.  I am nearly at the top of the dose I should take and when I visited the GP a couple of days ago, she suggested that I go back to the MS nurses to see if they were more up to date with possible new drugs than she was (!) or what sort of cocktail they could come up with as they have more experience in prescribing for MS.  That says a lot.  I think my post of 6th June covered a previous experience of the nurses.  They seem to be held in high esteem amongst the medical people and, as I’ve said before, are the obvious people to be caring for MS patients as what we need is nursing, nurturing, soothing and being cared for, particularly as the doctors can’t do anything be they GPs or consultants.  So my next job is contacting the MS nurses and I will report back on what solutions they come up with.

I won’t repeat myself on the uselessness of drugs or more details of the pain I am experiencing.  Other than…..forget rattlesnakes and boa constrictors.  The new pain killers manage to concoct worse effects than my snakey friends or perhaps my imagination is lacking, in that I cannot come up with the right creatures now.  But I thought pain killers were meant to kill pain?

So, you can see why I haven’t written much this summer.  Not much positive to talk about really.

Yes, there is.  Huffy puppy is the best thing we could have had happen.  She is turning into a really lovely dog, but I would say that wouldn’t I?  Plenty of room for improvement, but she is only 10 months old.

I’ll report on what the MS nurses come up with

We seem to have been up and down to London quite a lot recently seeing various consultants, so something to report.

First, I had a routine visit with the MS nurse and these nurses are vital to those with MS as, now I think about it, nursing is all you can do for MS sufferers.  Forget the words “cure” or “treatment”, which is hopefully what a doctor could do.  So, it was the same nurse I saw at our local health clinic.  The first thing she said to me was how I would not be eligible for Ocrevus (Ocrelizumab) as I didn’t fit the NICE criteria.  She rather caught me unprepared as I thought she’d be asking the usual routine questions not blasting me with negative information the moment I walked into the room.  Shades of the dreaded Dr Redmond.  I was feeling quite wobbly that day anyway so it was quite easy for me to burst into tears.   “Oh dear” she said “Are you feeling depressed”.  Well, what the hell does she think I’m feeling…….?

So a referral was made for me to meet with The Neuropsychologist which turned into a telephone consultation and she decided she didn’t need to see me but has suggested I contact her if I’m feeling suicidal and gave me links to contact The Samaritans amongst others.

A week later I was up in Blackheath seeing Dr Silber armed with my MRI and was told that because I didn’t meet the necessary criteria because I have no new lesions, I was not a suitable candidate.  The decline I am witnessing is not new lesions causing new symptoms but just the existing lesions getting worse, which is not good enough for NICE.

A week after that I was at UCHL seeing Dr Brownlee who is the doctor the first private consultant I saw passed me on to.  In fact he is NH and he said exactly the same as Dr Silber.  When I asked both of them if I could try the drug privately the reply was the same.  It’s not worth it.  Ditto Stem Cell Treatment.

The only positive thing I heard said was that Dr Brownlee will make sure I am added to the register for drug trials.

So let’s see.

Goodbye Gabapentin but……

It’s been a while since the last post and a bit of a rollercoaster but I feel enough has happened to report to you all where I’ve got to.

So, I’m off the Gabapentin.  I did it very, very slowly and carefully but it all tied in with the series of blood tests which showed the creatinine levels were back to where they should be having come off that drug.

But I couldn’t manage without some sort of relief so Amatryptaline was prescribed.  At first it was effective, but after a month I went back to the surgery and saw yet another GP with whom I had a really good discussion.  She prescribed Pregabalin which I am trying to manage as effectively as possible.   I’m on a very low dose at the moment but having to increase it.   I was rather unclear as to what drugs I can and can’t have and gather there are a range that are called “controlled drugs”.  Rather than me repeat what can be found on the internet, see here for an explanation of why drugs are controlled.  https://bnf.nice.org.uk/guidance/controlled-drugs-and-drug-dependence.html

I think this is a new directive.

I cannot describe the pain in serpent terms as it is so different.  But the difference between the pain that fights through the Amatryptaline compared with the Pregabalin is notable.  And neither are snake like.  Or eel.  “Indescribable” will do at the moment.  If the pains are spasms it’s easier for me to manage them and I can at least tell if they’re getting worse or better by timing the spasms.

Think of a red hot steel poker being thrust down inside your leg.  Or arm.  Or both.  Sometimes that is accompanied by huge pressure on my eyes, which isn’t affecting my eyesight (yet) but is jolly uncomfortable.  Sometimes there is a block of ice scratching along my skin in the opposite direction to that in which the poker is travelling.

 As a result I feel much much weaker and I have to be really careful how I pace myself.   Socialising is particularly difficult for countless reasons.  Jut so you know, I can’t really maintain a link with someone sitting beside me as I can’t turn my head after a few minutes.  Straight ahead is fine, so at least I can still play cards.  When I can hold them.  Cutting with a knife is not easy, and twirling a fork to load it with Spaghetti is challenging.  I can still do it but not for long, or much longer.  Eating is quite a challenge, and I don’t drink anymore.  Well, not for the moment.

Huffy puppy continues to delight and entertain and must be the most spoiled puppy in dogdom.  Her toy box exceeds my wardrobe and I’ve had great fun chucking out all my old clothes so that’s not difficult.  I can usually manage one simple task in the garden each day assuming the pain is under control and my muscles are compliant enough.   A big difference compared with this time last year is that I can actually feel the constraints of the symptoms now.  Sometimes I have no “give” in the ligaments or tendons or muscles at all.  As I said earlier in this blog, “Sclerosis” means hardening (from the Greek).  It feels as if the muscles, tendons and ligaments in my right limbs have no give in them at all.

On a more positive note, I had the necessary MRIs before going to see the consultant and once I have the disc and report in my possession I will go back to see the consultant in London.   In the meantime I’m thinking about the stem cell treatment, or, back to acronyms, HSCT.  Dr Kazmi and/or Dr Turner work with Dr Silber and I’m going to try and get on one of their programmes, I think at the London Bridge Hospital.  Or look at Switzerland.  I look at the criteria you have to meet and I tick all the boxes but one, so I’m not sure………..and as I’m no radiographer and don’t have the correct software to read the MRIs I’m not exactly in a position to argue why I feel HSCT would benefit me.  The box I can’t tick is whether there is evidence of inflammatory activity.  It has certainly felt like it, but the pictures may tell a different story, and indeed the one line message I have had back from UCLH states “ there is no evidence of new lesions”.   So you are now as informed as I am.

 

You may be aware of last weeks news about Ocrelizumab being available now.  This is the one drug that could help Primary Progressive MS sufferers.  But you have to match their (NHS) criteria.  Don’t ask me what that is as I do not know.  And neither did the MS nurse when I asked her.  But there is a glimmer of hope that I may be eligible and it’s possible it may slow things down.  As soon as I can say something informative I will post it on this blog.  And the same applies to Stem Cell Treatment.  But, you know, I’d settle for a pain free existence.  Pain is so exhausting and debilitating.

i hope my next post will be more positive and informative.  Sorry if I’m having a bleat.

All is going quite well on the pain relief front in that I’ve succeded in reducing the dose which has apparently proved that the Gabapentin is the culprit.  So I’m back on the supplements and now on the lowest dose I’ve been on for over a year.  That’s the good news.   But that doesn’t mean that I’m pain free.  Far from it and I had a particularly bad attack at the end of the week which lasted over the weekend.

The reason why I came up with different creatures to help describe the pain was to help me differentiate between them and also to help try and visualise what is going on in my body so when I use the yoga breathing techniques I can target different muscles, nerve paths etc.  Which was working effectively, along with the CBD oils.  But what is going on now is too fierce and ferocious and disabling for me to try and put a name or face to them.  And they start up at completely different times of day.  They’re far more intense and also compromise my mobility directly.  My right arm and hand have taken a particular bashing over the weekend.  Holding a fork or knife in my right hand is really hard work and my legs were so weak I really questioned if I had to get up or go anywhere.   I will not use a wheelchair until absolutely necessary and all the time I jolly well can walk, I will.  But I can understand how it is easier to just give up and always be pushed about.  At least everyone knows where they are then and you can plan accordingly instead of letting people down or getting into situations where one is compromised.

Thankfully, this morning things seem to have settled down a bit which could be because of the enforced day of rest I had yesterday or it could all ramp up in the next few minutes.  But here I am back in the tank trying to make plans and a new week begins.   If I’m truthful the scariest bit over the weekend was the weakness I experienced.  I have a few methods to combat the pain;  hot bath, CBD oils,  resins and tinctures of varying types, the .1 of a gram three times a day of Gabapentin and yoga breathing.  I have two other prescription drugs in my cupboard which I will use…..when?  If I take the steroids I have to plan when I’m going to have an exacerbation as I have to take something else as well three days before I take the methylprednisalone.  Amatriptaline is another thing I’ve been given, but when I read the instructions that come in the box I am none the wiser as to how they work or when to take them.  I’ve asked the MS nurses and a doctor or two how to manage the dosing and had completely different and rather unhelpful advice from them all.  So I do still have some unused and different ammunition to play with.  Let’s see what the week brings.

That’s a bit of a joke as I’m certainly not marching anywhere.  To be truthful I’m sitting at 24’ of pressure enjoying pure oxygen and peace although not quiet as Paolo Nuttini is here with me.

i am aware that my posts are infrequent now compared with when I set out on this journey but unless I have something new to say I can’t see the point in just having a bleat.  Or boring you all with news of Huffy the Puppy.

So, what’s new.  We went down to Cornwall last week and just before leaving I was contacted by my GP who wanted to run more blood tests in support of the bone scan I’d had.  When I had the tests I booked a telephone appointment with my new doctor (the last one who I built up a relationship with is now so popular you can’t get an appointment with her) who duly rang me when I was sitting in The Pandora on Restronguet Creek.  The concern was that apparently my kidneys are objecting to something and they don’t know if it’s the Gabapentin or the supplements I’m taking which are all vitamins or oils, or indeed something else entirely.  So I’m now coming off the Gabapentin faster than I was planning, but I’m doing it.  After messaging the herbalist I’m even more sceptical about the supplements being the culprits but just to honour her instruction, I’ll stop taking them too.

And we’re now decompressing so a good moment to stop.  I’ll keep you posted as to what is happening on the kidney front.  And the pain.  Back to the cannabis….