mother of all relapses: the return

MS has to be one of the worst conditions to live with - for the person who doesn't have the condition, that is.

Of course it's unpredictable for us - but when we wake up, take stock and learn what we're dealing with that day, at least then we have one job: deal with it. My wife works, looks after our home, organises pretty much everything for our daughter, and she has to be a helpless onlooker to whatever situation I'm in that day.

I finished my course of steroids on Friday but the next two days were just weird. One day I felt like I was starting to get on top of things, the next I looked green and was more or less immobile.

Sleep was hard to come by, but Sunday was the worst. Overactive bladder meant I had to get out of bed at least 6 times in the night. Plus I also had the latest in an evolving series of trips and falls, going arse over tit into a rotating fan, which added to my ever-growing collection of lurid bruises. What larks. At least I didn't wake anyone up this time.

Monday I spent lounging around watching TV and just trying to get some rest. I also ate some food that I actually wanted and which didn't taste completely crap (only baked beans on toast but it hit the spot). So I was feeling pretty positive (if utterly banjaxed) when I turned in that night.

Unfortunately after a good chunk of sleep, I tried to get out of bed. I swung my legs over the side and then couldn't raise my upper body off the bed. After about 20 minutes of grunting and straining (yes, and swearing) I got myself onto the floor and could go no further.

We called my father-in-law who came over and was able to bear some of my weight in order to get me to the bathroom. Later I called the MS Nurses (again) and they asked me to come and see them (again). At that point they were talking about me being admitted for a full review.

When we got there, the neuro (following some physical tests and a conversation with the top prof we saw last week) decided that this was more likely to be a continuation of the relapse. Not necessarily evidence of progression (although more tests and a new MRI will be needed once I've hopefully got over this relapse).

As I responded well to them in the past, they've put me on a further course of steroids, spread over five days just like in Relapse 2012. Yeah, I know.

We also talked to the lead MS Nurse about the number of different drugs I'm taking. Talking about Fampyra, she said that a lot of people's experience with it shows a dramatic improvement followed by a levelling and eventual dropping off. Which certainly chimes with the Neuro who said that it's clearly not working currently and I should stop taking them, at least for a while.

To give Mrs. D a break, I'll be staying at my parents' house, at least while the disruption of another round of steroids runs its course. The stress of me being in the house was making her ill - so at least this way she should get more of a stress-free night's sleep.

My parents? Maybe less so.

drugstore cowboy

So I've now become the kind of person who needs a pill organiser. After a few too many times when I've forgotten to take my Tecfidera (even though it comes in packets arranged by day of the week with AM-PM time-slots) and the very thought of forgetting to take Fampyra (because I'm paying for those), my wife bought me this snazzy little number.

I know I could take doses out of order but I like being able to see that I've taken my dose (or definitely missed it). The mental gymnastics required to think, "OK this capsule is from Tuesday PM which translates to Sunday AM", is simply too much to bear. PLUS Fampyra is packaged up two-by-two as doses need to be taken 12hours apart.

There are a lot of variations - join with me on a trip through my day!

Pre-breakfast:
- Fampyra dose one
- Mebeverine dose one (faecal urgency)
- Solifenacin (bladder urgency)

Post-breakfast:- Tecfidera dose one
- Vitamin D3 5000 iu x 2
- Flaxseed oil capsules 1000mg x 2*

Pre-lunch:- Mebeverine dose two

Pre-evening meal:
- Mebeverine dose three
- Fampyra dose two

Post-evening meal:
- Tecfidera dose two
- Baclofen 5g (nighttime leg spasms)
- Gabapentin 300g x 2 (neuropathic pain)
- Flaxseed oil capsules 1000mg x 2*

(* The Flaxseed Oil capsules are recommended as part of the OMS lifestyle diet. They are also proper horse-sized so they don't fit into my organiser)

I was sorting out my organiser when my brother paid me a visit recently. He was pretty horrified (I think his actual quote was something along the lines of, "How does one person take all those drugs and not die?"), although he was quite impressed with the tin Mrs. D bought to keep my stock in.

I laughed off his concerns at the time but viewed as a list on here, it does seem a bit much.

How many tablets /supplements are you taking?  And which if any do you think you could cut out?

as we go up, we go down

So my MS MOT was as exhausting as always. Who knew sitting in a hospital all day could be so tiring!

We got there in enough time to grab a coffee before we made our way to the waiting room to do some GRADE A WAITING.

For some reason they always have a TV tuned to a programme which features somebody you'll never meet buying (or selling) a house (or an antique) that you will never visit (or see). If you're really unlucky it's a mawkishly sensationalist programme about somebody you'll never meet having some kind of 999 Emergency.

The neurologist was obviously running behind because the nurse asked me if I wanted to see the physio straight away. I didn't have anything in particular that I needed to say to her but it beat the heck out of sitting in the waiting room.

We had a quick chat about my intermittent adventures with walking and swimming and the benefits thereof, before she had a quick look at the stick which she had given me last time. She thought it looked a bit worn and rickety so she toddled off to get me a new one. Very nice!

Then it all started to go a bit wrong.

The main thing I get from these sessions is a talk with one of the neurologists - to talk about treatments, future developments, and to check that the drugs I'm on are the right ones.

But the door we entered was marked Registrar. Now, this is probably a very high pressured position, requiring a dizzying amount of training, education and commitment. I'm not belittling it and I certainly couldn't do the job.

However, this particular guy took TWO mobile phone calls in the five minutes I was with him - at one point he sent a text message while I was answering one of his (borderline incoherent) questions.

Me and Mrs. D just goggled at each other. During the 2nd phone call, she walked out to find a nurse in order to make sure we could talk to someone else as soon as possible.

When he got off the phone (2nd call) I asked him to turn it off but there was no point as he was rapidly winding up our chat.

The NHS is a wonderful (if woefully under-resourced) thing. And the team was obviously under-staffed on that particular day.

But this is the ONLY chance I get to talk to a member of the team from one year to the next.

Obviously I can call the (fantastic) MS Nurse team anytime, but often then I'll be in the middle of a suspected relapse. Advances in research and / or the latest medical interventions are not at the top of my chit-chat list.

We eventually had a really good talk with the head neurologist. In summary:

• Rebif is still one of the first-line treatments they prescribe and as I'm tolerating it well (and because it has been two years since my last relapse with no new symptoms of note), there's no real need to monkey about with my treatments. Most of the newer treatments are designed for people with much more advanced symptoms.
• If my Disco Legs continue to plague me, I could stand to increase the Gabapentin dosage (I currently only take 300mg a night).
• We had a good chat about Vitamin supplements (basic advice: FILL YR BOOTS WITH VITAMIN D)
• Also my most recent blood tests (if there are no family members reading this, I'm a little bit anemic - if I'm related to you, EVERYTHING IS FINE)

So nothing new. But it was nice to hear it from the top.

If we'd have left after seeing the Registrar, we'd be thinking what was the point?

sixteen and time to pay off

A relatively quick post because yesterday I had another appointment at the Urologist.

Which meant that the weekend of my 40th birthday (which was lovely, thanks), I had to fill in another VOIDING CHART. 

It was no biggie really - the nurse told me previously that it was more as a guide to frequency, rather than setting a gold standard for accuracy. 

Anyway, since our last meeting I've been trying to go for a little longer and to ignore my pesky misfiring nerves - and the nurse was pleased with my progress. 

The following conversation is pretty much verbatim:

Nurse - You've basically got three options now. One: you can keep doing what you're doing now, trying to go a little bit longer when the initial urge hits, in order to try and make the volumes increase when you do 'go'. 

Stevedomino - OK. So that's the 'less easy' option...

Nurse - Two: there are drugs which you can take that can support the bladder retraining process. I know you're taking Oxybutynin...

Stevedomino - Actually I stopped taking that a few months ago. One day I just forgot and I decided to keep going. Anyway, with my Rebif and Gabapentin, I tend to think that I take enough drugs. So if I can avoid taking MORE that might be best. 

Nurse - OK, well that's fine. There is a third option. Have you ever heard of a TENS machine?

Stevedomino  - Oh yeah, my wife had one for use during the early stages of labour. 

(As an aside, I remember thinking at the time that a machine which gave me short bursts of electricity was some kind of IDEA OF HELL - I have enough trouble with pins and needles and spasms. But anyway...)

Nurse - So you know what they are and this works in just the same way. You have to use it for so many minutes a day, ideally for a period each day.  And in collaboration with all the other things you're doing, it can have a positive effect on bladder control...

Stevedomino - Well, that sounds pretty interesting...

Nurse - However, you can't wear the machine in the same way your wife did. Because it needs to affect you bladder, the electrical current is transmitted via a large probe which you insert into your back passage...

[epically-long pause] 

Stevedomino - Oh... So tell me about the first option again?

I must say it gave my wife quite a laugh when I told her about this option. And she has already said that she might give the nurse a call the next time we have a falling-out:

Actually, Steve has been thinking and he would like to try the anal probe... no, he can't get to the phone right now... no, just send it for my attention...

I hope my rampant oversharing has spread a little sunshine in your day too!

Also, the nurse was a firm believer in the theory I was talking about last time...

quickie

So Gabapentin is great for my leg spasms - and it also means I sleep like a log (and snore like a warthog - sorry Mrs D!).

It beats spending another night at the Disco(Leg)thèque anyway.

I feel a bit woozy in the morning but I like to think that adds to my charming muddle-headed slacker persona at work. Let's see how it works out on days when I actually have to do some real work!

This morning I went to the doctors so I've got a scrip for getting my Vitamin D levels checked out - there has been a lot of talk in various MS-related circles about this recently. - so will be checking this out soon.

A friend of mine who has Chronic Fatigue Syndrome had this done recently and found that her levels were something like 15% of what they should have been - she says that the supplement she's been taking since then has improved her tiredness, muscle and joint pain. So it's got to be worth a go.