Mandi’s blog

Otherwise known as KMSTC.  In case you don’t want to leave my page (!) here is what this fabulous place is – and it’s just down the road from me.  In their words:

“The Kent MS Therapy Centre, is a wonderful space dedicated to improving the quality of life for people with Multiple Sclerosis. Our fantastic centre opened in January 2015, allowing us to provide a wider range of therapies and services that are vital in helping to alleviate some of the symptoms of MS.

We are a self-supporting charity and funding for the centrecomes from donations, from members of the public, businesses and institutions. Fundraising is a constant focus in order to meet the growing demand for services.”

When I say ‘just down the road’ I mean about 12 miles away.   But it is the only place in Kent , maybe the whole of the south east that offers all the therapies and support it has to hand: reflexology to acupuncture, physiotherapy to reiki, counselling to aqua therapy.  But most important of all is it has a hyperbaric chamber.  Again, it is probably better you reference this yourself, but if you want my version……….

You enter a chamber that is like getting into a tin can with rounded top and sides but a flat floor.  You can stand up straight in the middle but only if you are no more than 160-170 cms.  It is bright and light filled.  Painted white with 3 portholes each side and six chairs cleverly adapted so the back legs don’t go to the same length as the front ones, but hook onto a ledge that runs the length of the chamber each side about 35cms from the floor.  Each chair has a little stool upon which to rest your feet and a pillow which you can do what you like with.  I use mine as a back rest and if there is one spare I use it doubled on my lap as a ledge to put my book.   This is because when I put my glasses on over the mask, which covers my nose and mouth, I can only see to read at a particular angle.  So each chair has a hose dangling down either side of it and they are already connected to a demand valve (your oxygen) and a dump valve (the outlet).  So having sat down, arranged my book, ipad, iphone, glasses, water glass I then attach my mask to the two hoses.  When all “divers” are present, the door is shut tightly and we are then taken “down” to the equivalent of being under 24’ of water.  Are you still with me?  Then a voice comes over the speaker to tell us we’ve reached our depth and to put on our masks.  So for an hour I breath deeply the 100% oxygen supplied by the demand valve.  The theory is that being under pressure the body’s capillaries and vessels are extended and soothed and repaired by the pure oxygen.  The treatment starts at 16’ which is fractionally shorter (in time) and if the patient feels they have benefitted from that they stay at that level.  The options are 16’, 24’ and 32’.  I have stayed at 24’.  The initial course is intense:  20 treatments in 4 weeks.   Which really is intense!  I felt I was hardly at home at all.  Which I wasn’t.  But at last I felt I was actually doing  something.  This is not going to heal me, I know, but it is helping me retain my independence a little longer and hopefully slow up my disabilities.   And maybe ease up the pain.  When in the tank I have met so many people (you can chat on the way up and down) and they do not all have MS.  Some with cancer, using the oxygen to heal radiation burns, some with fibromyalgia, some with Lymes Diseases and a few with Parkinson’s.  The doctors do not recommend it to anyone, indeed one has said to me to save my money, and yet there are people here (yes, I’m in the tank right now) who have been coming for years.  Decades.  What does that say to you?  And people travel miles to come.  The furthest I’ve come across is Switzerland but more realistically, Sussex, Essex and Surrey and all parts of Kent.  So we’re decompressing and it’s time to sign off.  Dinner to cook for guests tonight but I’ve got to buy the ingredients first. I’m posting this without checking it, so apologies for the typos.  I blame MS.

That’s a rather mystifying title and one I imagine most people would not have heard of.   It is quite possible that is the name given to the test I have just described and the Nerve Conduction test is the one I am about to relate.  As nobody told me what they were doing I am at a loss.   I only know these two “names” because that is what the communication I received from UCHL told me they were going to do.

So, after the first test I was passed onto a very pleasant young girl who I think was described as some sort of technician.  I am afraid I forget some of the details now but I do know she was not a doctor.  Anyway, she wired me up in a similar way to the first young man, except this time the wires went to my legs as well and the room was  just as cold as the last one and I learned at this point there was a problem with the heating!  Usually people complain about hospitals being overheated but this particular clinic more than made up the balance in the other direction.  As well as telling me about her commute into Fitrovia from New Cross this person was only too happy to tell me about what she was doing and dealt with everything swiftly and efficiently.  Apparently, the tests measure the electrical activity in parts of the brain caused by light, sound and touch and they can help doctors diagnose someone with MS because they can detect problems along some nerves that are too subtle to find through other examinations.  When I went for my last two consultations I was told that these two tests had revealed nothing conclusive on the MS front.  These consultations were on 25th April and 25th May 2018, and were after I had a lumbar puncture and another MRI, which had been done on 4th April.  Apologies for the inclusion of those dates but I realise that I am relating these events slightly out of order so I thought I should just include those dates for my reference as much as anyone else.

By about 1pm I was told they had finished everything they needed to do and I was free to go home.  By 3.30 I had made my way back home where I collapsed into a heap of weariness and tears.  I realised that what had upset me so much was that I just felt like a piece of meat being prodded and pushed with no reason or explanation.  My husband is totally unused to me collapsing and weeping and thank goodness after a hot bath and a rest I was able to pull myself together.  That is a day I would not like to repeat but I fear that many patients find themselves going through something similar or worse.  However, there are people out there who have had the same tests which were not at all unpleasant.  Cue?

Enter:  Stage right.  Coral Snake.  I’ve not come across her before but she has a particular habit of managing to get my right shoulder and right buttock at the same time.  She thinks she can get away with her presence because of her beautiful bright stripey strip (?) and I try the mindfulness and deep breathing to try and dispel her presence.  At 5.15am this morning I gave up the meditative approach and plugged into the shipping forecast instead.  Coral Snakes obviously don’t like grey skies and damp, cold weather (and force 6 out at sea!) and she let me know it.  It’s much better for me to be upright and doing something, to try and ignore these slithery, sneaky serpents and after 4 or 5 hours the coral snake has gone back under whatever it is that it likes to live in – the leaf litter of the rainforest floor I understand.   Another fact I have learned is that because coral snakes have small fangs, rather than biting quickly and letting go (like vipers), coral snakes tend to hold onto their prey and make chewing motions when biting.  And that is exactly what happens with this latest pain:  it comes on suddenly and then crunches about for a few seconds before easing up and then coming back again.  And again.  And so on.

Do you think she chews with her mouth open?  Yuck!

My next post will be about the amazing therapy centre we have here in Kent, but in the meantime I’d love a name for the latest character (as above) and you may also get an introduction to Stan.  Stan?

Perhaps this is a good point to apologise to anyone in the medical profession who may be unhappy about what I have said about the experience I described in my last post.  But, that is how it happened.  I didn’t make it up.  And re reading it, I think if somebody had told me what was going on then all would have been well and I probably wouldn’t have noticed the cold room or the badly presented doctor.  But, it was the worst day since I was first diagnosed in December and the way that doctor broke the news was appalling.   What the NHS are managing to do, in the somewhat straightened circumstances they are in, is fantastic.  But what happened to me that day wasn’t really anything to do with their performance as such;  sadly a representative of theirs let them down, badly.  I know there are people out there who have had the very same tests, and found them well handled and no problem, and please post your comments to balance mine.  But bad presentation by a representative of such a brilliant service didn’t help me in my current predicament.   I would have 100 lumbar punctures instead of a morning of Nerve Conduction tests.   I will come on to Lumbar Puncture Day shortly.

Claudia and Monty raised their heads or tightened their grip more frequently yesterday.  I’m not going to give in and raise the dose back up to where it was at the beginning of the week, mainly because I don’t have any 100mg capsules with me right now.  And as someone has calculated for me, does 3.5% (the amount by which I reduced the last dosage) really make a difference?  Well, I suppose it did on the way up………

I know the scientific amongst you will correct what I am about to say but this is my view as an uninitiated patient.

This wwas last February and I had left home in the dark and caught a train up to St Pancras to present myself more than on time at Queen Square (UCHL Neurology).  I was really impressed with all the brilliant information I had to get me there making allowance for disabilities various and even with photos to assure you that you were in the right place.  So I sat down and waited.  No receptionist, no one to register with just a room with lots of chairs all round it and an empty desk.   Was I in the right place?  No one to ask – not even next door..  or next door to that.  And bearing in mind it’s first come first served I didn’t want to lose my place.  Then another couple wandered in (patient and friend), then another.  Then a nurse(?) came in and just led them away followed by another who said hello and checked my name and disappeared as quietly as she had appeared.  So I was in the right place.  About 30 minutes later a different person, a young man with nothing “medical looking” about him asked me to join him in a room the other side of the corridor.  He had on some sort of overall, but that was it:  I mean he had clothes on!  But nothing professional about him. No stethescope round his neck (are they still used?) but a tape measure and cold hands.  The room was cold and bleak and I had to sit at a very awkward angle holding my arm just – so – and without any explanation he started to attach different coloured wires to my arm with useless strips that were supposed to stick and when he positioned them he offered up the tape measure really randomly before deciding where to stick the next wire.  There appeared to be no need for accuracy and I was mystified and appalled at the gung ho approach.  I asked a few questions – including his name as a name tag was absent – and got the distinct impression he was trying to concentrate and it was better if I shut up.  So I did.  Then he turned the machine on;  swivelled some knobs, flicked some buttons and turned some dials.  The he scratched his head, wiggled some wires (God, I HATE wires), rubbed his nose, adjusted his glasses and swivelled the knobs again.  “I’m sorry” he said, this machine appears not to be working.  We shall have to move to another (cold) room.  So the knitting of red, blue and green wires were scrunched up (the sailors amongst you would be horrified) and he leapt to the door and beckoned me to follow.  Having gathered my coat, gloves, hat, bag, book and handkerchief I trotted, lamely, behind him into the third cold room.  (The first one was the reception area).  The same performance was repeated but apparently the machine was working.  When I asked about the dial readings (trying desperately to work out what he was doing) I again got a grunt and a murmur and I got the distinct impression in was best not to ruin his concentration.  I have to say there was absolutely no pain involved just a lot of discomfort because of lack of thought or preparation.  This apparently was testing Evoked Potentials.  I then had to wait for the next set of tests and you will be relieved of having to read any more as my session in the hyperbaric chamber has come to an end and I must now get home to get ready for a wedding!  And I’m trying very hard to ignore Monty (Python).

Bear with me – I am still learning how to do this blog lark and having just read through the earlier ones (sorry about the typos – I could have sworn it was error free) I see that there is a date to the left of each post so I don’t really need to start off with one on the heading.  And now I’m rambling:  Or Gabbling.  Put it down to the Gabapentin.

That is the drug which is giving me some relief from the pain but my new best friend Dr Brownlee has suggested I ease back from the dose I’m on (which is quite high).  So, having done this exercise before and failed, perhaps because I reduced the doses too quickly, I will do so very, very slowly.  And I’m going to go into the exact doses just in case there is anyone out there reading this who is going through the same exercise.  I was on 900mg+900mg+1000mg over 24 hours.  As requested I dropped the nighttime dose to 900mg (2.7g every 24 hours).  And Claudia sidled round the corner.  But just a quick strike.  Monty has had a go too and the Esther made a fleeting appearance.  I cannot say if I was doing anything any different that may have disturbed their slumbers, and the appearance was so quick.  OK.  I can cope with that.  Let’s see what happens over the next few days.  I find it hard to believe  that the 100mg drop makes a difference to a slumbering snake.  There’s a ratio or a fraction or a percentage in there somewhere and those who know me can work that out.  I can only go down (or up) in 100mg amounts.

The next post will be about the Nerve Conduction tests. I think.  What appeared to be randomly applied sticky things (which had lost their stick) a tape measure (the sort I have in my sewing box) and loads of wires.  I HATE wires.

First of all, for anyone just joining this blog, the beginning of this journey is at the bottom.  I expect you all know that, but just in case there are people as novice as I am at using a blog, I thought I would mention it.  And of course it would help if I had begun each post with a date. Which I will now do.  Sorry. But I hope you can make sense of what has come before.

And just to confuse matters further I am going to fast forward with my MS progress by updating you with what happened on Friday when I went up to UCHL for an appointment that I had been notified of three weeks ago but I wasn’t sure what it was about.   It could have been purely for a blood test which seemed a bit bonkers going all the way to St Pancras for them to extract a syringe or two full of blood.

So, in a nutshell, after a year of fluffing about, I have finally seen a specialist (who I have been handed on to by the Professor I saw in Queen Square)  who I have connected with and although he hasn’t said anything different to the other two;  it was the way he said it.  It is primary progressive MS although described by the consultant as mild.  In terms of DMT (disease modifying therapy) stuff, I have been assured I am not “ripe” enough to merit it, and my next appointment will be in a year.  I did suggest 6 months and he (Dr Brownlee) countered that by saying it is is better to allow a bit longer between scans and assessments because of the way the disease progresses.  I have to admit I am not entirely sure about that approach but I have to have faith in somebody along the line.   I took heart from his remark that it could now progress very, very slowly but there is no foundation for him to say that.  Or the opposite could happen.  Quite simply, they don’t know.  But I feel much calmer having seen him.  He was the first doctor who gave me time:  The first who talked to me as if I wasn’t a fraudster or an ignoramus.

In fact, to celebrate – I went shopping!

But I have more to add regarding pain relief, Monty, Claudia and those blinking eels.

At the beginning of September I had a consultation with a Doctor who specialised in Neurology.  He asked some hazy questions and carried out a very brief examination;  the most technical part of which was running the end of a spatula type instrument down the sole of my foot.  I dutifully touched the end of my nose with my eyes shut and stood on one leg and then the other.  And that is as thorough as his examination was.  “You’re fine.  There’s nothing wrong with you.  The pain in your back is not in my level of expertise.  All I can suggest is you get your head scanned and cervical spine”. The cervical spine is the very bit at the top.

The pain in the relevant bit of my back (L2 and L3) were due to prolapsed discs and an annular tear and not part of that doctor’s specialisation;  which I could understand.  So, I took heart from that, and whilst doing the physio exercises and swallowing Gabapentin (a painkiller) things calmed down for me – mainly thanks to the Gabapentin.  In October I had the MRI’s done of my cervical spine and head and then in December went back to see same specialist who, as we walked through the door to his “surgery” (we met in the corridor outside) said. “Hhmmm.  Things have changed a bit.  You’ve got MS.”  Just like that.

Needless to stay we were stunned into silence and shock.  Not just because of the diagnosis but the bluntness of his words.  It may have helped a little bit if he had said there would be a possibility of seeing an MS nurse.  Or fast tracked a letter to my GP with a bit of explanation as to what could be done next or…..something.  But that was it.  Christmas was just around the corner so the whole system was going to be in shut down until after the New Year festivities.  He wasn’t entirely sure from the evidence he’d seen on the screen, so he suggested a lumbar puncture should be done and that would be another indication towards a correct diagnosis.  His feeling was that it was progressive and not the relapsing or remitting type which, I get the impression, is what younger people tend to start off with and then it morphs into progressive.  I am still unclear as to what the indications are that makes a doctor decide whether an MS patient has R & R MS or Progressive – or indeed if it is MS at all – there are quite a lot of diseases to do with the nervous system out there.

Over the course of the Christmas festivities I grappled with coming to terms with the fact it looked like I had MS.  When I asked the consultant who gave this diagnosis if there was anything I could do to find out more, or give relief, or suchlike he just said “keep off the internet”.  I could sort of understand that as of course the internet can open up a globeful of horror stories.  Perhaps because it was Christmas, any helpline I tried, like the MS Society or MS Trust, was useless with apparently nobody there.  So I was on my own.  So I did precisely what said specialist told me not to do and got onto the internet.   And I think I have the intelligence to be able to filter out the not so helpful content I found there.

At the same time I went to a herbalist who gave me time, talked and listened, and supplied me with countless pills and potions to try and calm the inflammation that was going on with my nerve endings.  I also changed my diet and became one of those people I dreaded arriving on my doorstep with a bunch of allergies.  So I’m now gluten and dairy free.  I have to say that I have never felt any ill effects from either of those ingredients but if it was going to help I’d do anything to calm down the progress of this disease.

At the beginning of January the pains started up again (having subsided between September and December) and so I began the course of Gabapentin which I had stopped in September.  At the same time I came across KMSTC (mentioned earlier) which became a beacon of hope for me over the next few months and upon which I tell you more about in my next post.  The pain problem beginning again, was draining and the pains didn’t disappear with the onslaught of the Gabapentin (which eventually had an effect).  Claudia is a cobra who likes to sink her teeth into my right buttock.  Repeatedly.  Every 30 seconds.  I am happy to say she has shuffled off into her nest somewhere – or wherever cobras live – and she has not visited me for a while.  Instead there is a python who has taken her place who I have not yet christened.  Any suggestions?

I do not want this to become a dear diary affair and I will not be posting every day unless circumstances dictate that.   However there may be quite a flurry of activity to begin with, just to explain what has happened to date.

I finished my last post with a brief description of one of the pains I have – and this is not going to become a pain diary either.  But it is that particular symptom which started my path to diagnosis.

The first acute attack of pain I had was back in February/March 2014 and I remember it clearly as I was getting into a car and had a sharp pain all down one side of my right leg and up into my lower spine (which I now know is called the lumbar region).  It was notable because of the acuteness and it was unlike anything I’d had before.  I put it down to moving awkwardly or a trapped nerve or something and I felt no need to see a doctor about it as it went away after a few days of making spasmodic appearances.   Now fast forward to the first week of February 2017 when I had a similar attack after getting very, very cold and having to stay at that temperature for a few hours.  The next 24 hours were very cold and uncomfortable and the pains started at the same time and seemed to disappear when we went away to South African warmth in the middle of February.

Only to start again with a vengeance on our return at the end of March and I was eventually driven to see my GP about it.  At this time our GP who I had been seeing for over 30 years was retiring and the practice closing.  So my need to see a doctor coincided with finding a new practice and then working out how to actually see a doctor.  A whole new experience to me as we had been incredibly lucky with our old practice when we could get an appointment within a few hours of telephoning and seen immediately upon arrival.

So the Health Centre which I transferred to held all sorts of mysteries that needed to be solved before I could begin to try and tackle the system and be seen by the same GP so there was some continuity to my “treatment” and we were all talking the same language.  I was aware that as soon as I walked though the door the clock was ticking and the allocated number of minutes had to be used profitably.   So why waste them running through a shaky history of how I remembered my pains and symptoms.  If I saw the same person each time we could discuss that particular day’s issues instead of the whole performance being repeated again and again.

Entrance:  Bernard the Boa Constrictor.  As I write I have a squeezing to my right thigh.  That part of my limb feels as if it is in a vice.  But, hey, he’s been joined by one of  Esther’s little friends who is dancing around my right hand and at the same time she has managed to text her friend Stewart (the Stone Fish) who lurks around on the kitchen floor and gets stuck to the instep of my right foot.  Or could that be Seymour, the Sea Urchin?  Sharp, prickly, scratchy spines rubbing around the instep and going deeper if I put weight on that leg.

Back to the surgery.  By August I managed to see the same doctor a couple of times AND she remembered me so at last a bit of continuity.  I asked if I could see a neurologist as the physio wasn’t working and although the Mindfulness App I had used had some benefit, when the pain was really bad I’m afraid my mind lacked the education to transcend the continued attacks from Bernard and his gang,

And you haven’t met Claudia yet.

 

MS. Multiple Sclerosis

MS. Mind over Situation

MS. Memory Shortfall

MS. Mission Statement

Last year, on 7th December I was told succinctly and without any words of support that I had MS – probably of the progressive nature.

My husband and I reeled out of the hospital in a state of shock.  We have been through some shocking times in our long life together and I think this is up there with one other truly life changing event.  More on that later.

The purpose of this blog is to try and make sense of my life as it is now turning out – and that of other people too maybe, if they want to join in.  And also to keep our many friends and family up to date with where we have got to, trying to rebuild our lives on the many levels we exist.  I am aware that when I see friends and family now, all we seem to talk about is this disease and I do not want that to run my conversation as well as trying to run my life.  By visiting my blog you will know how I am doing.  How I am being affected.  What sort of help or treatment I am getting.  And the latter I hope may be of help to other sufferers maybe.  The condition is a very lonely one.  If you say the dreaded C word everyone knows what it is.  But people don’t understand about Multiple Sclerosis unless they have been touched by it in some way.  

A boyfriend from years and years back once said to me, “You’ll survive.  You’re too much not to”.  I cannot remember the circumstances which prompted this statement but it’s something I have remembered over the decades and there have certainly been times when I could quite easily have wished I could give in and let events over take me.  But I’m too much not to.   I’m not sure upon what premise he said those words and trying to qualify them I do not in any way mean I am too much in that I’m something amazing.  But I’m not going to let the bugger beat me. 

It’s taken me over five months to reach this stage where I feel strong enough to begin this mission.  Not this blog as such but this new life.  The last few months have been horrible.  I have been horrible.  The weather has been horrible.  But I think I’ve reached a turning point.

I have been of the view that inexplicable things happen to people for a reason.  It is up to them to make that reason have a purpose to be of use to either the individual or others around.  I’m not saying that to sound pious or goody two shoes or whatever:  But just to try and make something positive out of this place I now find myself and so here is my Mission Statement.

1. I understand that no two versions of MS are the same.  Therefore it is very difficult for those who do not suffer from it to grasp exactly what it is that does or does not work.  How disability strikes each person differently.  I hope that perhaps this blog may help people understand a condition which, it seems to me, the medical profession find hard to comprehend.
2.   I will really try not to berate the NHS or the medical profession.  I know the former are struggling with inadequate funding in an out of date service.  But I have had only a little help or support regarding Multiple Sclerosis from anyone in the medical profession. But there has been a beacon of hope in the form of KMSTC, The Kent Multiple Sclerosis Therapy Centre.  More, much more on that fabulous Centre later.
3. Finding humour in this situation.  Is this something to do with Monty Python’s Always Look on the Bright Side of Life?  And it’s funny Python has come into this statement;  there will be more on pythons and other slithery things later.

So, you people who read this will know how I am, without getting the whole explanation and chapter and verse which is boring to have to listen to and I hope I can put it in a way that makes this mysterious ailment more comprehensible.  My life is going to be affected in so many different ways from immobility to incontinence, diet to lifestyle and I am sure in all sorts of other ways I haven’t yet begun to think about therefore experience but are going to be lurking around like some sort of Malevolent Serpent.  Here we are, back to snakes again.

What follows below is an example of a frequent experience.  Read it if you wish and more will follow on my next post.

PAIN

Some people have MS and no pain. But they probably have something else instead like maybe Muddled Speech or problems with sight.  The Optic Nerve is one of the targets of the MS machine.  But pain has been a big problem for me and has been the reason why I have been travelling along this road to diagnosis.  And how do you explain pain?  I am sure most, if not all of you have experienced some sort of pain but when you are trying to describe it to a health professional it isn’t that easy.   Is your version of what you call a cramp the same as the next person.  I can’t begin to appreciate the pain a man feels when he’s been kicked in the balls.  The same way he can’t begin to understand a period pain.  A professor I have seen (for the second opinion) started to ask me about the pains I was experiencing and got really quite short with me for apparently contradicting my pain experiences.  So I now have different names for them, the names being either aquatic creatures or slithery snakes.

So, there is the Electric Eel.  He stretches himself out from one end of a limb to the other.  If he’s feeling really energetic and friendly he might ask his mate to join him so there is one down my arm and one down my leg.  The tingly sort of pins and needles are like little electric shocks – very little shocks but they make my hands and feet feel as if they being constantly electrocuted.  And I’ve been there with the Nerve Conduction Tests which were not nice.  Not because they were very painful but because of the way I was treated.  More on that later.

So, you have met Edred and Essssther the Eels.  That will do to start and they are the kinder of the monsters who come to visit. 

Thanks for joining me!

Good company in a journey makes the way seem shorter. — Izaak Walton

You are joining me AND good friend Patrick who is helping me set up this blog.  If anything goes wrong or you don’t like what I’m writing, put it down to beginner’s nerves.  And the nervous system features quite strongly in what is to follow…….