A.J. Walker

writerer

The Walton Centre

Had my appointment call with an MS Nurse from the Walton Centre yesterday. This was a follow up/introduction call in the wake of the MS Neurologist appointment (Dr. Mills). The Walton Centre covers an area from Preston down to North Wales so I’m lucky to be only 1 mile from the Centre (if and when any actual visits are allowed rather than telephone or video calls). The four specialist MS Nurses at the centre cover 5000 patients.

As well as introducing herself and the team the telephone appointment comprised discussing where I was up to in terms of the relapse and broadly probing the extent of my knowledge of MS and clarifying things. She outlined how things will progress going forward with the Walton Centre who will be the specialists dealing with me. My GP is there for everything else, but for anything MS related the point of contact is the MS Nurse Advice Line at the centre. If there are any relapses I basically don’t bother my GP with things I’d call the Advice Line and a nurse will call back in 48 hours or so. The reason for the ‘wait’ is that generally nothing that changes should tend to be urgent, it’s all about changes and progression of the MS. There is also an emergency clinic at the centre if something occurs that requires investigating including anything that may induce a change in treatment. The GP will be copied in with any correspondence but will not be dealing with it.

We talked a fair bit about the medicinal side and Disease Modifying Treatments (DMT)–and obviously Copaxone in particular. According to NICE the entitlement for MS treatment is if the patient has had ‘at least two relapses in two years’: and I’ve had two in three months so will be put on treatment. The drugs get issued by the Walton Centre directly and not through a GP/prescription. They’ll get delivered to my home from a private courier so I need to be in for deliveries etc. I will also have a home visit from a nurse for the first injection to go through the injection process. The paperwork to arrange the drug will take a while, but I should be getting the drugs within two or three weeks. Exciting stuff, eh?

I understand that the injection device will be an ‘auto-inject’ pen like the ones people with diabetes use. The drug needs to be refrigerated, but it is recommended to take the drug out of the fridge a day before use i.e. not to inject straight from the fridge. The Copaxone will get delivered in one month batches in case there is any issue with the MS or any adverse reactions: if they delivered any more and in the meantime I was changed onto another drug then the stuff they’d delivered would be wasted. Makes sense. It can take around six months for the drug to get to the level it should so early relapses whilst on it won’t mean the drug isn’t working.

An MS Nurse will contact me in around six months, which I think will then continue
ad infinitum whilst there are no changes to deal with. The Advice Line will be the main point of contact and allow them to keep track of things.

Usually after diagnosis the patients are invited to the Walton Centre to see the place, meet the Doctors & Nurses and be told about MS. Due to Covid restrictions these haven’t been happening for the last year. To date I’ve only met the neurologist at the time he gave me the diagnosis in the hospital after the brain and spine MRIs and I’ve not met the MS Nurses. I’ve spoken to a couple of the nurses now who have both been great and had a good video call with Dr Mills. In terms of MS I’ve been provided good information verbally and with literature and links several websites.

In summary, things are progressing well with the nurses, doctor and treatment advice and I’m more than happy with all that the Walton Centre has done for me so far
even without having gone there (other than for the infamous Lumbar Puncture).

Onwards and Upwards.
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Copaxone

Not on the drugs yet. I suppose there’s no immediate rush but it would be good to get started and run with it. Literally perhaps.

Yesterday I received some information on MS including a pamphlet on
Copaxone (glatiramer acetate) which will be my first MS drug. Many people end up on one drug for some time (often years) before changing to another and another. I dare say that is likely to happen to me too. Besides, the advances with MS seem to be happening quite regularly. It could be one tablet that tastes of strawberries and cream by the end of the decade. Possibly.

I’m not looking forward to the injection part of it. It would be very strange if I was. The recommendation is to rotate the injection points through up to seven different parts of the body. These are: the belly, the upper thighs, the back of the arms and the upper hips. Repeated injections in the same place should be avoided for at least seven days. The pamphlet says that for the upper arms - and I dare say the hips - it would be best to do it with someone else there. Which is all well and good if you don’t live alone. Anyway with only an injection three times a week I guess I can just stick with the belly and the thighs. I can’t miss any of them.

Injection Spots
Injection areas (not sure why the figure is about to draw a couple of revolvers)

Not yet sure how the ‘three times a week’ thing works. Every two days with a day off? Or is it every two days so that it’s three times a week the first week and then four times a week? I guess when I speak to the nurse next week (yep, another call) I’ll learn all that.

I can’t start taking Copaxone until a) it’s actually prescribed for me and b) a nurse shows me physically how to do the injections. That is not going to be a fun appointment is it?

Onwards and upwards.
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An Injection of Peace

Had my first post diagnosis Doctor appointment with the Neurologist at The Walton Centre last week. Went okay. It was a video appointment. You need to log in to the online Waiting Room 15 minutes early. Was in at 11am for 11.15, but doctor didn’t log in until gone 11:30. So the Waiting Room was definitely realistic. The verbal message keeps repeating like you are on an automated phone, ‘We know you are waiting. Someone will be along shortly...’ or something like that. Needless to say the longer the wait is the more you think... “Am in the right Waiting Room?” Visions of the doctor logging into another Waiting Room and thinking you haven’t turned up are inevitable.

The doctor confirmed MS - obviously - from the
L.P. results. We spoke a bit about my current situation and he was happy things seemed to be stabilising and/or improving.

I’ve not blogged for a while on this so the doctor now knows more about it than any blog followers. Basically the current situation is that my legs - and particularly my feet - have been improving (not aesthetically just in terms of sending messages to my brain about things). At the start of this current situation - or relapse - my feet and legs couldn’t tell the difference if I was walking on sand, grass, or concrete. They couldn’t tell if I was walking over the knobbly concrete pavement used for blind people for instance. Now I can. The feeling in my feet is much better. As said previously the nerve-message to brain problem thing moved north and it became my torso, arms and hands that became the problem; in similar terms such as pins & needles, numbness, feeling cold and the damn MS Hug. The Hug is barely there now: when I first had it when I lay down it felt like I had a pile of hardback super tomes stacked up on me. Now it’s more like an old 2000AD comic. I can take that. The pins & needles don’t appear to be getting any worse: I can just about strum an open guitar chord. But if my fingers wander I may not notice till I’ve strum through a few discordant moments (many would say, “no change there then”).

Then we talked about medication options. Basically the two main open to me at the moment - whilst my issues not too bad - are a twice daily tablet
(Dimethyl Fumarate) or a self administered injection every two days (Copaxone).

The tablets work partly by reducing the white blood cells etc and require regular blood tests: six times a year. They’re not exactly sure how the things work; let’s face it they they don’t really understand MS. The injection meanwhile comprises a synthetic myelin compound which, in theory at least, trains the blood not to attack the myelin. No regular blood testing required - and much less in the way of side effects (the relatively common side effects for the DF drugs sound much worse that’s the current issues I have).

In theory the DF reduces the relapses by up to 40% (or at least extends the time until the next one), whilst the injection is at bit less effective at approximately 33%. The side effects from the oral drugs sounded too iffy and common. Although the injection option was, well: an injection, it sounded better to me. So I’ve opted for the Copaxone route. Not on it yet but should be in the next few weeks.

There was nothing outstanding that came up in the appointment. Random unpredictability is pretty much the theme of MS. But that in itself was good; in that there were no surprise bad news packages for me.

Another thing that I may not have touched on before is that MS can affect the muscles around the bladder and basically give you less capacity. This has been the case for me, but not majorly so - and it’s not been getting worse (probably a bit better if anything). Whilst I may be bursting when I wake up I’ve not had to get up the night to go. I know plenty of people who need to get up in the night for a wee dewatering exercise who don’t suffer from MS so I can live with it.

In summary, the current relapse appears to be stabilising and indeed improving. The promise of drugs to reduce the instances is a good positive. Will get back to work imminently - but defo have an eye out for a better job.

Onwards and upwards.
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A Cold Spring

It's only been a month since my MS diagnosis but if feels like several months have passed. I haven’t done an MS Update for over a week now. That’s largely because there isn’t much to report in that things are pretty much the same. I’m still fine moving around and doing 10,000 steps a day and all that. Last week I walked over 40 miles, which is pretty good. I have no pain or other symptoms, there are no signs of things getting significantly worse - so perhaps it's happy days.

The main symptoms I'm having at the moment are numbness and tingling to varying degrees. When sat or lying around I don’t notice it too much. But to touch the skin you can feel it very obviously. The infamous, awfully named, MS Hug doesn’t seem too bad at the moment. But the other side of this
Dysesthesia is a feeling of extreme cold. This is constant and affecting my arms, legs and torso and is not down to touch. I’m not used to feeling nesh and really want this to go away. But I suppose that at the end of the day feeling bloody freezing isn’t the end of the world when there are so many worse things it could choose to do.

Onwards and upwards (and bring a jumper).
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Limboland

Limboland-1

It was a big day for me yesterday post diagnosis. I spoke to an MS Nurse from
The Walton Centre. It’d been just over a fortnight since my diagnosis and it’s going to be another 4 weeks until I see the doctor. That appointment will be a big one too. But this one really was just as important in terms of settling my head. As I put on a tweet the day before I have felt in Limboland, not knowing what it all means and what the future may have in store; or what I should or shouldn’t be doing etc.

Anyway we had a good chat. She indicated I have
Relapsing Remitting MS, which is the most common sort (85% of MS is classified as this). The current episode and future ones are called ‘relapses’ even if it is the first one. They do have a problem naming some things (MS Hug: my arse). Other MS types are Primary Progressive and Secondary Progressive.

Being in
Limboland people obviously are faced with numerous fears, wrong assumptions and a myriad questions. When it came to the call my questions were essentially nebulous and I knew most couldn’t be answered. The nature of MS is that it is a disease tailored differently to everyone. There is no way to say when or how it will progress. You can make guesses at approximations. But there’s no way of saying by such and such a date x will happen and then y will follow.

Limboland-2

Even looking at ‘average’ cases is pointless. By its very definition many will be better or worse off. It’s frustrating of course. But then maybe me lying between the glass half full and the
que sera sera category it’s not too bad for me.

One of the biggest fears about MS is mobility issues. If you look at stuff about it so many photos and studies show people in wheelchairs. Be them happy photos or not it is inevitably daunting. But chatting to the nurse this scenario is a far from inevitable outcome. Around 70% of MS sufferers do NOT require walking aids and many of those that do may find it to be cane (everything comes back to
Dr Gregory House). The fact that 30% of people do require such assistance is only one part of the equation too: the other side is ‘when?’ I mean if I definitely get to a point I need walking assistance that is one thing, but if that is in a few decades time.... well, que sera sera. The point is at diagnosis (i.e. around now) the fear is that these things are a) inevitable and b) around the corner. In reality they are neither.
Just having the MS Nurse chat has helped a lot.

She couldn’t really talk about treatment options
per se. That will be up to the doctor to look at once he’s gone through the assessment of all the results and seen how I’m doing. But the fact is that there are treatments - no cures, but treatments - and these are improving all the time. The options are called Disease Modifying Therapies (DMTs) and of course as the MS varies from patient to patient so will the DMT options. It will be interesting to see. The point of these is to slow down the appearance of relapses and/or to speed up the recovery period from a relapse.

Even without treatment relapses will tend to go in their own time, although they may not fully bounce back to where you were before it started. So it may be that in a few days, weeks or months, this ‘relapse’ has gone and nothing remains of it. I can but hope. But there may be a residue that doesn’t fully recover. In that case I may get to keep some degree of numbness, pins and needles or just feeling damn cold. Will have to wait and see.

But when would the next relapse be? Indeed the $64,000 Question. And the answer is predictably: unpredictable. It could be months away, it could be years away. And it could be something else entirely too. Like
Forrest Gump’s box of chocolates: you’re never gonna know what ya gonna get.

One of the best outcomes of the conversation with the nurse (apart from she inadvertently kept saying things that tallied with what I’d said in my blog or in tweets) was her pointing me to a page on the
MS Society website. There is a lot of information out there on MS, but by its nature the vast majority won’t be relevant to an individual. And certainly whilst you are sat in your chair in Limboland the last thing you need is to start going down rabbit holes which may take you to totally unnecessary, and potentially very scary, places. I was well aware of the diseases variability and what effect that would have on the interpretation of general information, so have to a large extent being avoiding the internet information out there. It would be like going into the British Library knowing there were two or three books that could help you there, but not having any references: futile and demoralising. But my nurse pointed me to one specific page which was exactly what I need at this time. The bullet point questions and answers were great, but best of all was the pdf booklet download Just Diagnosed - an Introduction to MS

MS Soc-logo

The booklet is clear and concise and gives a fabulous overview of the disease and an outline on the way forward and DMTs etc. Basically, there is good information out there, but it really helped being given the correct reference for it
If you are interested in it you could do worse than having a peek at it. Until two weeks ago I knew nothing of it. Other than having heard the name I wouldn’t have been able to tell you a thing about it. I know a good deal more now and I’ll get to find out more in a months time. But just don’t say I’m on a journey.

Speaking to the
MS Nurse yesterday was fabulous - along with getting some decent, appropriate information from the MS Society - I’ve felt a great deal better since. I may still be in Limboland until I’ve seen the doctor, but at least someone has turned the light on and really the place isn’t as bad as it seemed in the dark. Onwards and Upwards, people.

Links:

The Walton Centre
MS Society
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