Week 36

Well guess who didn't make it to have some hyperbarick oxygen last Friday ? Yes, yours truly got a puncture less than a mile from home by the time I got the tyre fixed,  I didn't have time. It's not the end of the world though. I don't even know why I've wasted your time telling you. Sorry about that. 

Last time I wrote I was quite fatigued and I said I wouldn't fall asleep. Well I did! So what do I know about this illness. You're probably asking yourself why you read this fool's blog. If I wasn't me, I wouldn't read this inaccurate rubbish either. 

I don't know if I've mentioned it or not, but due to an overactive bladder, I self catheterise every time I wee. I use the Speedicath Compact male by a company called Coloplast. They're called 'compact' because they are just that. They come in a green plastic tube that is about 8 inches long. "You what? my urethra is longer than that!", is what any male catheter user would say right now if they were reading. The way it works is that as you pull it out of the case it extends to nearly double that length. A bit like an old  radio aerial. 

That's the advert over, so I'll get to the point I was going to make, and that is that to help with my excitable bladder, I take a drug called oxybutynin. Oxybutynin is an anticholinergic, which means it interferes with the path of the nerve impulses. As they calm down, the muscles around the bladder relax and the constant urgency subsides. 

I was reading a blog that my Neurologist writes and he's said that there is a link between older anticholinergics (such as oxybutynin) and cognitive impairment. I'll put a link to the blog at the bottom, if I remember. Newer anticholinergics don't cross into the brain like the older ones, and therefore don't contribute to the 'cog fog'. He then advises anybody taking a drug like oxybutynin to go and see your GP and ask for something different, something newer. 

So guess where I went yesterday? Yep, I went to see my GP about oxybutynin and he says that the dose I take is low (7,5 mg), so it won't affect my cognition. He also says it is by far the most effective eanticholinergic on the market. I'll have to speak to my consultant about the dosage and see what he says. 

For the record, I am not on Coloplast's payroll. The male compact Speedicath catheter really is that good. Try it. 

Happy Friday. 

Dan

http://multiple-sclerosis-research.blogspot.co.uk/2013/05/oxybutynin-worsens-cognitive-impairment.html?m=1

Week 35

Well we've hit May and the weather has finally turned. I'm not great in the heat. Every year I hope it doesn't play havoc with my symptoms and every year it does. It's not the heat that does me, it's more the humidity. It affects my legs the worst. I've fallen over twice already in May. Once was self inflicted (hic) and the other was a balance issue. Both times I bashed my head and I did suffer a lot of pain. No permanent damage though. 

Speaking of falls, I got through the entire month of April with just one fall - and that was in the very last day in the month. I've said before that this is more than likely the exercises I do, rather than the Gilenya. 

That fall along with the two others I've had at the start of this month means I've had three in a week. That's a bit of a worry. Despite the leg strengthening and core stability exercises I do, I haven't been so stable on my feet. I don't know if it has anything to do with the change in the weather, or not, but I'll monitor it. Maybe I should cut down on the booze a bit too!

I've had a couple of occasions where I've had fatigue this week, but I can live with that. Compared to pretty much constant, it's a massive improvement, and one that is a most welcome relief.

As I write this (Thursday), I have fatigue. I felt fine this morning and I went to the pub for lunch with my uncle. I had burger, chips and a pint of Guinness. I got back about 4 o'clock and out of nowhere - guess what? Yep, the fog was there. That dark misty sensation that lets you know that every muscle in your body is exhausted and every movement, no matter how minor, will be extremely laboured. There's nothing you can do about it, so you just go with it. I'm just laying on the bed now and listening to music as I type this. It's the Yeah,Yeah,Yeahs new album - Mosquito. Nice chilled out music. 

I won't crash out. I did for about half an hour, or so when I first got back, but on these rare occasions that I get fatigued, I can honestly say that the fatigue isn't as deep. You know what I mean when I say 'deep'. I credit Gilenya with that. Long gone are the days where I would sleep for two or three hours after lunch every day. It's so nice to have finally found a drug that is beneficial for me. 

It may sound strange me saying that despite this black wall in front of me, but I expect to be fine in an hour or two. I might even do some leg strengthening exercises later. Then again, I might not. 

Hyperbarick oxygen tomorrow. 

Happy weekend, people. 

Dan 

Week 34

I was supposed to get back to you all last week about my fatigue, but my MS made me forget; not my fault.Had I remembered to include my findings I would've told you that other than the two occasions mentioned where I had fatigue, there were no other times up until last Friday where I had any. Over the last seven days, I have experienced fatigue on just the one occasion - Wednesday afternoon. I can live with that!

I restarted my hyperbarick oxygen therapy (HBOT) last Friday afternoon. For those that don't know, HBOT is where you breath 100% oxygen at a depth of 33 feet below sea level.

It was nice getting back in the submarine again. Okay, it's not a submarine and it doesn't actually go under water. It feels like you're in a submarine though. You get locked in a large metal cylinder and they adjust the air pressure until it's the equivalent of being 33 feet below sea level. This takes approximately 15 minutes to. 'dive' to this depth and at this point, I need to point out that you can forget this treatment if you suffer with Claustrophobia as that door won't open until the air pressure is identical on both sides of the door. When you reach the desired depth, you put on a mask that has been connected to an oxygen tank, and, erm..., breathe. And that's it. The oxygen is pure oxygen.

When we inhale air, about 70% is Nitrogen. You've got some inert gases too, and the remaining 20% (ish) is Oxygen. Obviously the oxygen you're inhaling in the tank is 100%.

That's the Science lesson over, now back to why HBOT helps me. You're having the oxygen for an hour at a time. I don't notice any changes straight away, but that evening I feel more alert, my cognition is better. You know what 'cog fog' is like. I suppose it is all linked to fatigue which is better. Also my bladder is much better. I can control it more. It's a bloody nightmare when your bladder is in control of you!!

I should point out that trials were done on this therapy for people with MS, but the results came back inconclusive, so the National Institute of Clinical Health and Excellence (NICE) (why isn't it called NICHE?)chose not adopt it as a therapy for MS. Basically it helps some and makes no difference to others.

My fatigue and my bladder are two things that have improved since I started taking Gilenya. I know it's the drug that had caused these improvements because I stopped the oxygen when I started the medication. If I had continued my oxygen, I wouldn't know if the Gilenya was working.

The effects I get from the oxygen don't last forever. I go in the tank on a Friday and I'm good for the weekend. I would go twice a week, but unfortunately they're not open every day.

I would definitely advise you to look into it and see if you have a hyperbarick oxygen chamber near you. I'm lucky, the one I go to isn't even 20 miles away. What harm can it do? There are no adverse effects to breathing in oxygen. Nothing can go wrong. Go on, try it.

Enjoy your weekend,

Dan

Week 33

As I am on roll talking about Gilenya's side effects, and that is the actual reason you are reading, I'm going to talk about it a bit more.

Gilenya can cause a swelling of the macula (a spot in the centre of the retina of the eye), generally within 3-4 months of starting treatment. Macular swelling can cause symptoms similar to those that occur with an attack of optic neuritis, or may not be noticed at all.

I haven't experienced any problems with my vision since I started taking Gilenya and when I went to see (irony) an Ophthalmologist (eye doctor) for a routine eye examination after 3 months, they couldn't see (irony again) any swelling inside my retinas. As they were happy that I had swerved this potential side effect and I didn't need to see (last one) me anymore, they discharged me. Yay!

I did have an incident with my left eye back in 1998 when I woke up one morning and my vision in that eye was a bit blurred. Nothing massive, but after a few weeks I went to see (that really is the last one) an optician. He had a look (no more puns, eye promise) and said I needed to go to the eye unit at my local hospital and see (sorry) an ophthalmologist. After they had examined me, they told me that there was something behind my eye? They said it was more than likely fluid, but if it didn't clear up within two months to go back and they would investigate further. Did you notice that I resisted the urge to say look instead of investigate back then?

I've still got it to this day and I've always wondered that if I had gone back, would it have led to a diagnosis of MS seven years before I had my first official relapse and subsequent diagnosis? For the record, I believe I made the right decision to not look further into my eye issue when I was 24.

In other news, I think the fatigue is slowly working its way back into my body. That dark fuzzy mist is making an appearance. Only sporadically, but it's starting to rear its ugly head once more. Only for an hour, or two, but it's there nonetheless. I did say a few weeks ago that it cropped up for an hour or two 'here and there', but I do think the regularity has increased; not every day, but definitely 2 or 3 times a week. I am writing this on Tuesday and I've had some this morning. I also had it Sunday afternoon. I'll monitor it this week and let you know how the next few days have gone when I publish this blog on Friday. It's definitely something that needs keeping an eye on...

Eye apologise for the puns, but I did warn you of my returning to foolishness after such a sensible blog entry last week.

Enjoy your weekend,

Dan

Week 32

Last week I gave you my opinions on the drug BG12, shortly before I did a couple of minutes research and discovered I was talking out of my backside. This time I have made an effort and got my facts right about the POSSIBLE side effects of taking Gilenya before I preach to you.

The most common side effects during the trials of Gilenya were headache, influenza, diarrhoea, back pain, abnormal liver tests and cough. I put the word 'possible' in capital letters in the last paragraph because some, none even are guaranteed. If you've read my blog more than once (doubtful), you will know that I've had no side effects whatsoever - except maybe one, flushing. Hang on, that's not on the list, you're thinking? It isn't, but I copied and pasted the above list from the National MS Society website. I read about flushing elsewhere. I do seem more heat sensitive of late, which means a slight rise in temperature has me whipping off layers of clothes. I'm not great in the heat, post diagnosis, but I do feel like the sensitivity has increased. Lets see how I cope with the long, hot British summer this year!!!!!

Note to reader: I express sarcasm through exclamation marks.

Gilenya may cause liver problems. Your MS specialist nurse will do a blood test to check your liver functions before starting treatment. I had one on the day of my first dose and another one after Three months. Once you are on treatment, they want you to tell them if you have any issues with nausea, vomiting, stomach pain, loss of appetite, unusual tireness, dark urine or a yellowish tint to your skin or the whites of your eyes. As you know, I've had none of these side effects. That looks a lengthy list, but read the list of possible side effects on a packet of paracetamol, they list drowsyness as well as insomnia, or diarrhoea as well as constipation, so don't let it put you off the treatment, if it is something you're considering.

Like I've already said, I haven't noticed any of the side effects I've mentioned in this blog (except possibly flushing).

Before I go, I haven't fallen over once this month and we're almost 3 weeks into April! I must be due a double fall this weekend. Lets see how I go...

I apologise if this blog comes across as sensible and informative. I'll be back to my usual puerile nonsense next week.

Happy reading,

Dan

Week 31

My latest batch of Gilenya turned up on Monday. I can't believe it's been two months since my last delivery in February. Mind you, the weather we've had in the UK of late could easily lead you into the false belief that it is still February. We've had snow on and off since the end of November - and it's bloody April!! It has turned though, and spring is finally here. They reckon it will be 18 degrees celsius at the weekend in Essex.

There's been a bit about Tecfidera or dimethyl fumarate ( lets just call it BG12, shall we?) in the press recently. Apparently it is going to cost about $55,000 per annum. That's US dollars, so I make that about £35,000 in English money - At this point in time, I need to point out that my mental arithmetic is crap, but that's not MY fault...

Back to money. According to my maths BG12 is going to be over twice as expensive as Gilenya. The same with Tysabri, come to think of it. Why is that? Don't ask me, but if you did, I would tell you that I assume that there is less risk involved and the company that developed the drug (Biogen) are using this fact to blackmail our primary care trusts (PCT) into paying massively inflated fees for drugs with a better safety record. The problem with this is that the PCT's governing bodies won't 'play ball' and and life changing medication won't be adopted as it isn't cost effective. The loser here is obviously the patient, as per

Call me an old socialist if you like, but I believe that profit making organisations shouldn't be involved in the process of researching and producing new medicine. Our Governments should take control of this, but unfortunately we need a time machine to go back 50 years to when services were in the public domain and they hadn't realised it was cost effective to outsource various services to private corporations. Anyway, I thought BG12 worked in a similar way to Gilenya and Tysabri. Eg, it stops the white blood cells (immune system) getting past the lymph nodes and into the nervous system, therefore proposing a risk to people that are positive with JC virus. I probably should make more of an effort and do a bit of research on the stuff I write about on here, but that is far too organised for me. I will find out about how BG12 works and get back to you... one day.

Enjoy your weekend,

Dan

Ps,
I just had a look on Wikipedia, and it says that BG12 is NOT an immunosuppressent. That means you've just wasted five minutes of your life reading this blog, sorry.

Week 30

30 weeks! Wow, time flies when you're having fun!

This has been my hardest entry to do yet. I find it difficult telling you about my Gilenya 'journey' when I rarely have anything new to report. That's probably why I've been going off in tangents speaking about other stuff recently.

So, Gilenya: I think it's working. I'm sure it is? My fatigue has improved greatly, as has my visits to the toilet. I use it less to wee, and more out of the other end. I empty my bowels more or less every day. They haven't been this regular since before I got diagnosed with this illness.

Although my fatigue is still minimal. I have been wondering if (or when) it is going to start to rear its ugly head again. That does sound somewhat pessimistic, but when I started taking Tysabri, I noticed improvements within a few months, but within six, they had subsided and symptoms had returned to their pre-drug levels. Therefore I feel my pessimism is more of a realism. Long may it prove me wrong. I will keep you all updated on my fatigue situation.

I do still get a couple of hours here and there where fatigue stops me from doing anything. But we're talking once a week, and it certainly doesn't reach the level of where I have to go to bed and sleep. I just mong out in front of the telly for a bit and don't move. Hang on, I do a bit of that anyway, so what's the difference?

I managed to get through March having 5 falls. That ain't bad. One of the falls was after I had been put in a situation where I had walked further than my legs would normally allow and they gave up on me. Just as I reached the car too! Two were drunken trips and the remaining two were sober trips. I'm fall free so far in April. Yeah, yeah, it's only the 5th, but, so what? Let me congratulate myself here. I probably shouldn't gloat though, because using the law of averages, I am due one any day now...

Have a fantastic weekend, all

Dan