Author: 6mandi

My apologies for the unimaginative heading but I really am just trying to get my thoughts and facts correct and in the right order because tomorrow I have a rather important consultation with a haematologist who may be able to advise or prescribe or help with stem cell treatment.

But before I relate to you what happens with my online consultation with him there are a few developments from last week that you may find interesting. You will recall that my GP seems to be on something of a mission and is being extremely diligent not only looking back at my notes but putting pieces of the jigsaw together to come up with a different picture, maybe.

Two things happened at the same time one between a friend and me having a conversation about pain relief, and the second is my GP picking up for my blood test that I appear to be deficient in vitamin B. At her request I am now taking vitamin B12 and B6 and I think she is going to run some more blood tests to see what the levels are but she is suggesting that I have a course of vitamin B injections over six days and perhaps she thinks this will help the infection and maybe the pain?

The conversation I was having with the friend was about the fact I had noted and she had noted also through our conversations that when I had been on an antibiotic called Nitrofurantoin, The snakes and honey badger were knocked to the ground and for a long time I was actually pain-free. At Christmas I had had a sort of flu virus thing and at the same time managed to go down with cystitis. I rang the surgery and the doctor on duty gave me a three day course of Nitrofurantoin and I remember lying in bed with no appetite and feeling lousy and thinking well at least I haven’t got the goddamn pains. So that was three days at the very end of 2019.

About two weeks ago when the GP rang me and expressed concern that she thought I had an infection she put me on another dose of the same antibiotic which I will now call “NFT”, the same thing happened. When she rang me with the results of the blood test and told me to take the vitamin B and expressed her thoughts on giving me a course of vitamin B injections, I told her about the possible coincidence of the dreadful pains I have disappearing when I take these antibiotics: a fact she was extremely interested in.

So that is where we are. I hope I have included everything that has happened over the past week. And you may be able to visualise the parts of this puzzle which need to be put in some sort of logical order or better still slotted into place.

To summarise; it appears I have deficiencies in my blood which hopefully will be corrected by vitamin B injections and pills and we need to find out if there is any relation between the reduction in pain and taking NFT. Tomorrow I have a consultation with Dr Kazmi, the haematologist, and I will report on that consultation next.

I thought I would post an update as I realise my last post may have given the impression that things were not very happy and it was possible that something different is about to happen imminently.. Thanks to those who have got in touch with me via email or telephone, but don’t worry, I’m still at home and apart from the more aggressive nature of the pain attacks I just want to reassure you that the initial tests carried out on the blood samples I gave have shown nothing untoward other than deficiencies which may be addressed by supplements. But my keen young GP is concerned I do have a waterWorks infection (this sounds like something from Monopoly) and has prescribed a course of antibiotics as well as suggesting a change in pain relief; a rather drastic change I have to say. I am at present composing a letter to my consultant Dr Hari Krishnan who is being contacted by my GP as she is informing him of her decision to get me to reduce my gabapentin dose down to 1.8 milligrams a day instead of the 2.9 mg I am on at present. I am writing to him to make sure he thinks this is a good idea as he was the one who prescribed the drug at the beginning of the year..

Some of you have asked how I got on with the tai chi class that I began last Monday, 11th May. I logged on at 9:55 but couldn’t get the video part to work. I could hear Matthew perfectly but I couldn’t see him and as I know nothing of tai chi at all it was all a walk in the dark; literally. But, for the first 10-15 minutes I was able to follow him and all we were doing with the minutest of movements, was just beginning to move one’s head and then moving onto the hands, wrists and elbows,and then I’m afraid when we got down to the hips and legs I couldn’t keep track of what he was doing so I kept listening but I’m afraid I didn’t carry on with the exercises as they were impossible so I had to be doing them wrong.

A week later, yesterday, I was all ready to logon at 9:45 in order to sort out the visual part of the Webex tai chi session. So I would then be ready to start the class at 10 o’clock. Then the telephone rang. Having been prompted by the pain clinic my GP was telephoning me to discuss reducing my pain relief, specifically, the Gabapentin. Having just been tussling with a honey badger and a puff adder it wasn’t the best of times to be discussing with me reducing my pain relief when I was thinking of pushing it up another hundred milligrams. So after a 20 minute conversation with the GP who I think realised that it wasn’t the best of times to be talking to me, she finished the conversation, with some pretty general questions about my health; temperature, loss of smell, loss of appetite; which seemed to me coronavirus based queries.

I suppose, in a way, it was good the GP rang me when I was experiencing the pain attacks I described yesterday, and with her questioning things that have happened over the past three or four years, at a time when I could hardly speak it wasn’t difficult for me to start crying which of course made her realise things weren’t too good. 10 minutes after she rang off – I think it may have been less than that – she phoned me back and said that something doesn’t seem quite right to her and she wanted me to give blood in order to ensure I didn’t have an infection. So this morning I have an appointment at the surgery so she can check my liver function and other things. During the two conversations she made it quite clear that she was reluctant to get me into the surgery or hospital because of the coronavirus problem, but felt my distress permitted such a visit. I made it quite clear that I was more than prepared to run the risk just in case there is something else going on in my body and they could give me the right pain relief.

So that is this morning’s excitement and I am only writing this up in case things do go off in a different direction.. I have a feeling that the test may show up that my kidneys or something are objecting to the gabapentin. So then what???

And I still haven’t got to grips with basic Tai Chi.

I really feel as if I have moved into a different world. As, I am sure, everyone does.

The pain episodes have changed markedly in the past few weeks. I can not identify individual creatures, and the puff adder (who shall remain nameless) was only identified because it attacked a part of my body that up until then had remained protected.

The pattern now is that after a period of inaction (like sleeping or resting), when I begin to use any part of my body whether it be wiggling a toe (which I can just about manage to do first thing in the morning) or moving my head or arm, then the sharpest pains I have yet experienced shoot up and down the right side of my body with particular aggressiveness to my right arm, shoulder and neck. As I write (using my left hand), the sole of my foot feels like it’s on fire and the honey badger is tearing my forearm to shreds. Another new experience is involuntary movements. For example my arm or leg will suddenly jerk – making holding a cup of tea quite impossible. Even my left hand I find shakes uncontrollably as I wake and get going in the morning. Not all the time, but enough to make we weary.

I’ve been awake for about an hour now. Going by the previous occurrences, these attacks tend to wear off about an hour after they begin so they should subside soon as my muscles begin to be used again. Well, that’s my take on it. And that’s what gets me through them. Knowing the next phase is going to be better than the current one. The attack didn’t begin in earnest until about 20 minutes after I woke up but they should be easing off by now. A mug of hot tea would be nice. Held in my left hand – although that’s pretty shakey.

Ah! I know. A hot bath………..

 

I not talking magnetic fields or Cosmic rays here.  Just my place in it.  With the pandemic that grips us all I do not need to elaborate upon what my situation is at present.  We are all in the same boat.  But these are my thoughts on how the lockdown has affected me.

Social distancing hasn’t been a huge issue for me as I choose;  chose, before March 2020;  to avoid gatherings and crowds.  On the basis I can’t drive I don’t get out much and if I could it is always with someone for obvious reasons.  My life before Covid 19 had shrunk anyway, so I have not felt the effects as badly as those who are, sorry, were, continually on the move.  

I have been out in the car a few times on something like a petrol buying trip (for the mowers) or the farm shop which has very clever and rigorous controls over distancing people.  But this is not a blog about the affects of the Coronavirus but MS.  And it has made me think differently about my position alongside the larger picture.

But in the past couple of days my world has opened up thanks to Mabel.  Mabel is my amazing Freedom chair and I have been for two “walks” along the valley with Pip and Huff.  Their routine is to be up and out by 8am so that was a hark back to how life used to be.   But twice this week I found myself rolling along Duckpit Lane for 1.2 miles the first day and 3 miles the second.  Mabel apparently has an 18 mile range but that is obviously dependent upon the terrain.  Going up and down the hillocks bumps and banks in the garden is definitely more taxing than a smooth, flat, tarmac road.  But we don’t do those in Kent anyway!   But it was glorious to be out in the fresh May green of the Kent countryside with campion, May, cow parsley, bluebells and much much more.   And I think of all those years I just took it all for granted as I was surrounded by it all the time.  But spring has never been so beautiful.

One of Mabel’s more taxing journeys is up to the top of a small hill in our garden.  I think it’s a bit bigger than a bank and it’s certainly not a long slow gradient.  Perhaps a hillock?  But she can do it!  So I can now make it up to the bonfire or down to the vegetable plot several times a day.  I will still try and walk the distance once a day, which is what I was doing before Mabel arrived.  But then, that was all I could do, after that if I wanted to go anywhere I couldn’t.  So Mabel comes out from the barn each morning and quietly waits for me until I need her.  It could be to join Pip and Huffy for their walk or until a bit later in the day.  And, going by my experiences so far I cannot see her outrunning my “stamina”.  That is because when I am bumping along the road I have to tense my muscles which in a normal life wouldn’t be an issue but when you have MS that has progressed to the level my disease has, any muscle compromise during the day has to have some pay back.  In my case, fatigue takes over and it just means there will be something I then can’t do during the day.  

So to clarify:  I plan each day so I can balance what I need to do besides what I can do and what I want to do.  Then work out how much each is going to tire me and then make sure they’re in the right order.  Common sense really, like social distancing and deciding if your travel really is necessary and who is being compromised.   So, for an example I have Tai Chi this morning (I will ebalorate on that later) so I will not go for a morning roll to save myself for that.  The fact its blowing a gale is another factor, which would stop me anyway – not that Mabel couldn’t do it but I hate the wind…….as you may know.  But I have a new freedom which can’t be properly exercised yet but I’m really looking forward to an expedition to a beach front or somewhere where I am in charge of where I’m going.   

Two years ago I went to the National Gallery and the RA to see a couple of exhibitions by using a wheelchair provided by the gallery.  It was a terrific opportunity to go to both of these  places and I could not have done it without the willingness of the friend or relation who was prepared to do it.  But I would not want to do it like that again.  It is extraordinary how when, if you are sitting in a chair and ask a question, the reply is not directed at you, but your pilot!  And what does it matter you might say……..well, it just enforces the word, invalid.  Think about the pronunciation and definition of that word.  And  whether I am sitting in a wheelchair or an ordinary chair at the kitchen table I find what I say is not heard.  I do not have a voice any more.  (Come to think of it, it does only last 20 minutes or so, now I think about it.)

It has taken a week to write the above.  I haven’t finishe d yet, but strange things are happening to my iPad and I can’t keep the text I’m writing in view.  It’s a bit like a memory game with the blindfold on from the start.  And it really isn’t a symptom of my disease…….or I hope to God it’s not.   No;  I’m sure it’s techie related. 

You know, those Christmas trees that light on a given circuit.  Like a chasing light circuit or flashing irregularly, or regularly, or fade and dull?  That’s what it’s like now, when I wake in the morning there is no pain.  It’s like my muscles are sliding off my bones.  But as soon as I try to move anything, the whole menagerie on their Christmas tree get cracking.  

Did I tell you about the Puff Adder?  Bastard.

It has taken a week to write the above.  I haven’t finishe d yet, but strange things are happening to my iPad and I can’t keep the text I’m writing in view.  It’s a bit like a memory game with the blindfold on from the start.  And it really isn’t a symptom of my disease…….or I hope to God it’s not.   No;  I’m sure it’s techie related. 

You know, those Christmas trees that light on a given circuit.  Like a chasing light circuit or flashing irregularly, or regularly, or fade and dull?  That’s what it’s like now, when I wake in the morning there is no pain.  It’s like my muscles are sliding off my bones.  But as soon as I try to move anything, the whole menagerie on their Christmas tree get cracking.  

Did I tell you about the Puff Adder?  Bastard.

Monty    – the Python

Esther    

& Edred. – Electric Eels

Bernard – Boa Constrictor

Claudia. – Cobra

Stewart. – Stone fish

Seymour – Sea urchin

Coral Snake

Chorus.  –   Sea snakes

You will remember, I saw Hari Krishnan last October and left him with the hope I may be a candidate for Ocrelizumab.  At his direction I had an MRI on 6th December the results of which were eventually read and reported on by the end of February.  I received a letter which said “I can report that you have no new lesions”.  This meant that I would not be a suitable candidate for said drug.

Through persistence, I had an appointment this morning with Hari Krishnan again and he reiterated that I was no candidate for Ocrelizumab, even if I was, the lessening in symptoms and progression would be minimal and apparently it was hardly worth taking the drug, even if I did match the criteria.  Particularly bearing in mind it costs the NH £60000 per pop., and there are patients who would get more benefit than I would, so let them have it.

So I asked about stem cell and got the predicted reply.  To summarise;  it is unproven for MS patients and of the 15 people he has put forward for it, 2 have died.  And as he verbalised this statistic he was called into an adjoining “surgery” to advise another patient who was seeing one of the MS nursing team.

“Any more questions” he said as he came back into the room and so I said that I couldn’t understand why my symptoms were so much worse and yet the MRIs weren’t showing up the hard evidence.  As well as the pain (and that is a wholly different topic) the use of my right hand is severely compromised and I cannot walk far at all.  This was interpreted as fatigue so a prescription for Amantadine was written.  I will report on the usefulness of that when I’ve turned the piece of paper into a box of tablets.  So, 40 minutes later we emerged from the hospital with a prescription to buck me up and very, very clean hands.

I reported to him that I had swapped back to the Gabapentin and the dose I was on.  This current dosage is not enough so he has okayed and encouraged me to raise the dose and apparently I have plenty of slack before I reach the maximum dose.  That’s not quite how I read it as I’m already two thirds of the way up the ladder to the full 3.6g.per day.  Whatever………

Back on the Gabapentin the serpents are back.  There are still times when they are all out on a jamboree, but I am back to recognising old friends.

Am I calling a snake a friend?  On that basis Covid 19 may become my best friend.

Back on the Gabapentin and the old cast are back.

Obviously, the preferred method of transportation of those two is to do it on your own two feet.  You haven’t got to worry about steps, stiles, ditches and distance for a start.  They are there at the end of your legs to use at your direction.  Without exploring further there are resources  to hand like public transport – or indeed your own car.  At present, with a huge amount of support from family and friends, I am getting by but rapidly approaching the time when I need to make that mental jump in order to keep some form of independence.  I think there is some denial going on, in that having made the choice and purchase, I may then stop trying to get around by foot which will help speed up my decline.

But I feel I am now missing out.  There have been times in the past month when I could have joined in something Pip and the dog were doing but couldn’t because I couldn’t walk further than 100 yards. Take for example, when we went up to North Wales I could’ve joined in with a walk on the seafront in Llandudno.  Or a roll on the stands at Abersoch or even trundle up and down the little streets and slopes of Portmeirion.  I was unable to do any of those things not because of the weather which I admit wasn’t great, but I just didn’t have the ability to do them. Which of course meant that perhaps Pip didn’t do them because he felt he had to keep me company, or did not want to make me feel I was missing out on something. Which I was. Okay, it is an exception to be away from home and exploring, but I use that as an example.  Up until about two months ago I was able to get around a supermarket and do my own shopping, but I do find that very hard work now.  It is not just using my legs and cruising up and down the aisles, but finding a parking space close to the entrance, Then getting to the place where the trolleys are by which time the last thing I want to do is go shopping.  Roll on Ocado.

I am not trying to justify whether or not I need a wheelchair. I do. But it is a huge decision to actually go out there and buy something you never thought you would need.  I have been doing a bit of research and there is some amazing kit on the market and I had a remarkable demonstration by a very well informed and helpful young lad from “Spring Chicken”.  I understand the company was  set up by a woman who works in the City who has a father with Parkinson’s.  Frustrated by the inadequacies of what she was trying to find for him, she set off on her own and then began to market various types of chair that are light, self propelled, attendant propelled or electric and using the latest technology in batteries and materials.  The one I had a demonstration of, at home, was the Freedom 06 which is not exactly light at 27.3kg but is very neat in its design;  easy to collapse into a size that fits snugly into the boot of a car and has a 9 mile range, per battery.  There are other points in its favour, which I will not bore you with, but here is the conundrum.  If I want to meet a friend in Deal, for example, for a jaunt along the seafront and out onto the pier, then it would be perfect.  But how do I get there, public transport to Deal not being ideal from where we live?  So, to carry out the scenario, Pip could help me put it into the car (which is another issue, but let’s say it is now a hand controlled car which I have either found and bought, or had an automatic one of my own converted (this is assuming I have changed my manual car for an automatic one which is what it has to be in order to convert it).   That is all easy, if boring and time consuming to carry through.  So I have now arrived in Deal and have to find somebody to help me lift it out.  The friend I am meeting could do that, true, but let’s say I was going to do something completely independent, like shop for a birthday present, or take some air on my own or with the dog.  And this is assuming I have the leg power to get from the drivers seat to the boot.  I apologise for burbling on,  but this is an indication of the choices I have before me.  And aren’t I lucky to have those choices, I suppose, but I am trying to explain that it is not that straightforward.  Or am I making life unnecessarily complicated?  And all of the above is assuming I am still driving a car. That is another incredibly boring and time-consuming thing we have to sort out. When you have Multiple Sclerosis your cognitive skills are severely diminished.

I have just had a nasty scare, in that I pressed a button by mistake and I thought I had lost everything I have just dictated. With that in mind I am going to publish this now, as I’m sure you’ve had quite enough.

as I have rather neglected my blog for various reasons.  I will not go into all of them as they will begin to sound like a bunch of excuses but the main one I suppose is that I was unable to get into my blog because I had forgotten my username or my password or something techie:  But that has now all been resolved – obviously, with the help of the younger generation!

Another reason why, particularly as time has progressed, I have a lot more to say and I am having to think quite carefully about how I prioritise, because I have a lot of big decisions to make.  Those decisions aren’t only down to me so there is another reason for being slow in adding another post;  but really that is just an excuse.  In the last post before Christmas, I wrote that I had just had another MRI and then, I think, just after Christmas, in my review on the year, I explained that there was a delay in getting the results of the scan because there weren’t any radiologists in the hospital to interpret it.  So I can now report on that and, at the same time, practice dictating into my iPhone in order to then upload my writings on to my blog.  As I muddle my way along you will have to be patient with me as I present my thoughts one by one.  

Back to the MRI:  after much chasing and trying to be patient I received a telephone call from my GP who said “I’m pleased to see you have no new lesions“,  to which I could only reply, “That’s the last thing I wanted to hear”.  As you may remember in order to receive Ocrelizumab (the only drug on offer to PPMS patients), I need to have at least two new lesions. The fact I have deteriorated over the past few months – in fact I’ve just carried on deteriorating since my diagnosis on the 12th of December 2017 – is, it seems, of no importance.  New lesions are, apparently, what count.  Through persistence, I have managed to get another appointment with Dr Harikrishnan and I hope he may be able to help me forward my interest in stem cell treatment.

I went to a talk in the summer of 2018 given by Dr H where, it seemed to me, he was opposed to such treatment as it was unproven at that date. I am now, through another route, trying to get an appointment with a Dr Kazmi who is a consultant haematologist and specialises in stem cell transplantation for MS.

I can still walk 20 yards unaided, in fact I can walk further than that (but don’t make me wobble) which is one of the criteria by which you are judged as a suitable recipient of Ocrelizumab.  But I have now reached the point where I am prepared to admit that it would be an awful lot easier not just for me, but whoever is with me, if I wasn’t trying to do it on my own 2 feet but with the help of a wheelchair.  What I am trying to say is that I have deteriorated to the point where my leg is so weak, and before my hands are completely redundant it would be quite nice if we could just slow down the rate at which I am becoming useless.

That leads me to my next conundrum;  and I would quite like to try and explain my thinking and rationale behind the choices I have and those I actually make, or should be making, to make life more pleasurable not only for me but those who live or spend time with me.  And whilst all these things are going on, I/we are making decisions about what happens in the new bathroom which is being fitted out for my needs now, as well as when I am completely immobile or wheelchair-bound.  The Occupational Therapists I was put in touch with to help with with design were unable to see me for four months!!  Upon reading the couple of sheets of A4 I was sent, I could work it out on my own.  Deciding upon which bath, or where to put it, is quite easy, as was thinking about hoists and handles and grab rails and other practicalities. However choosing a wheelchair is a bit like trying to choose a car when you know absolutely nothing about what use it will be put to or exactly what is required of it, and it is a choice or subject I never thought I would have to be thinking about.  And is unpleasurable to say the least.  Although I realise there are some people who would say there is no pleasure in buying a car either.

I think I will continue this tomorrow.  I am tired and I will take one conundrum at a time when I try and explain my thoughts and decisions.

To remind me, due to a hopeless memory, I will next write about wheelchairs………….

I have been tardy in keeping my blog up to date and there is good reason.  I lacked the techie know how to add the next post which I had written but couldn’t upload as I couldn’t even get into my blog.  And now I’ve managed to lose said post.

But here I am, purely to say I am rewriting what I had composed earlier and will update you all when I’ve renergised my fingers.  Actually, I might try dictating it, which will be interesting,  but not possible in the tank with my oxygen mask on.

Bear with……