Posted by: Gavin Lehmann | August 5, 2009

Me and my Copaxone – Week two (and a bit)

Afternoon all,

So, I’ve had two weeks of taking Copaxone now and gotten into the routine of injecting in the evening in either my thighs or ample belly (must remeber to rotate). Rather than go through each day (lets face it, ‘Injeted today, stung a bit’ eight or nine times is a bit boring) describing each via the medium of smiley or not so smiley faces

Saturday =), Sunday =), Monday expressionless, Tuesday same thing (obviously went on his hols), Wednesday πŸ˜‰ (cheecky), Thursday =\, Friday =/, Saturday missed (wedding and much drinkypoos distracted me), Sunday =|, Monday =) and Tuesday =)

So, a clear indication of exctly what taking Copaxone is like =).

Generally I get some discomfort in my legs after injecting (little bit of muscle pain, not so bad) and a bee sting pain in my stomach when I inject there (although this has become less and less with subsequent injections).

It’s far too early doors to be expecting much from the Copaxone at this stage, and me having a relaapse in my legs hasn’t helped with that fact either. I’m off to see my neuro this afternoon for a check up on the injection sites and things and also to discuss the possibility to Tysabri, we shall see.

My updates have been a bit sporadic lately as I’ve just started a placement with a film/tv production company so I’ve got a lot less time on my hands. But (big news) I’m also helping out with a film for young people with MS. A lovely lady called Gloria is looking for short stories from young people (25 and under) with MS to create an inspiring short film.

If you’re 25 or under and live here in the UK then get in touch with her through gloriamorris251 at btinternet dot com and share your story!

I’ll catch you all later

Gav

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Posted by: Gavin Lehmann | July 26, 2009

Why MS can take so long to diagnose

I’ve heard of many people who have been told they have ‘possible MS’ or ‘probable MS’ or it takes YEARS to diagnose and they’re often left wondering ‘Why is it taking so long? Why haven’t you given me a diagnosis yet?’ and the reasons are two fold.

The first is the fact that, for a lot of people, being told they have MS is a life altering moment. They may argue that being told you have ‘probable’ MS is worse, and I can see their point of view, especially when to themselves they have MS, but you need to bare in mind that when you’re in a negative mindset you only see the negatives. At least with possible or probably MS you still have the hope that it might be something else, unfortunately for many they don’t see that side of the argument, they hear the letters M and S and their mind starts conjuring up all these worst case scenarios (we all do it, about everything, and the media really doesn’t help in that regard). No neuro wants to diagnose someone with MS and would you rather not be in limbo land and have them continue with tests only to have MS ruled out after five years? If the neuro is 80% sure you have MS, tells you you have ‘probable’ MS, there’s a 20% chance you may not have MS, 1 out of 5. In a room of 20 people with ‘probable’ MS, four get to go home without the booby prize. Yes, it’s a horrible five years for the other 16, but would you not want to be one of the four that get to go home with the Ferrari?

The second reason MS can be so bloody hard to diagnose is the fact that it’s so insidious. It’s like the criminal mastermind of the auto-immune disease world. It doesn’t leave any one single piece of ‘evidence’ that you can say ‘it was MS!’ with any real conviction. No, the police must first rule out all the other suspects first. You’ve all played Cluedo? It can take forever, and taht’s just with four players. Now imagine there were 10000 plyers, and you had to first rule everyone out first, before you can declare ‘Aha! It was Mr Plum with the candlestick in the library!’ You can see where the neurologists dilemma lies.

If you’ve been told you have probable or possible MS it could by a whole host of other possibilities. You just need to try and find the positives, you could be going home with the Ferari…

Gav =)

Posted by: Gavin Lehmann | July 25, 2009

Me and my Copaxone – Week one

Something a little different for you all today, I’m going to be doing a sort of diary of me and my Copaxone injecting, let you all know how I get on. But first, some information on what Copaxone actually is =)

Copaxone (or Glatiramer acetate to give it it’s generic name) is one of the five (until recently four and then Tysabri cme long with all it’s shiny newness and effectiveness. A bit like when your best mate shows up for a drink with an absolute stunner,Β  she gets all the attention) licensed drug therapies for the treatment of Multiple Sclerosis. It is self administerred through daily injections (that dont hurt, honest!) and must be kept refigerated, although can be kept at room temperature for up to seven days (although, just like when you defrost that rib of beef, it can’t be put back in the fridge again). Interesting fact (well, fact anyway) Copaxone is the only one of the four ‘older’ DMDs (disease modifying drugs) that is man made. Fact. It’s been shown to have approximately a 30% reduction in relapses (or 1/3 if you’re a drug company and you like to make things sound a bit better than they actually are) and is considered the least effective of the four main DMDs (but we really are splitting hairs there). It is also the defacto treatment for people after they finish Mitoxantrone as it’s both shown to be the most ‘complimentary’ of the four DMDs and it also has no effect on an otherwise imuno-compromised patient.

Now that we’ve had the formalities I figure I best go trough with you how my first five days on the Copaxone have gone.

Tuesday 21st – It’s the big day, whoop de fucking hoo, I egt to stab my self, yeah! (great if that’s you’re sort of thing, pain is definately not my sort of thing). The previous day my MS had begun to flare up with a spot of ‘feet in a bucket of sand’ numbness. Whether this was stress induced over me worrying about the injection, an underlying virus or just my MS iving me a polite nudge that it was still there, who knows (the feeling has begun to return to them now =)). I’d already had the kit delivered the previous Friday (video coming soon kids) and had a play about with it. The do provide you with an ‘autoinjector which seems more like a bloody shotgun to me, I’ll do the injection naked thanks (well, not naked naked, you know what I mean). I’d decided that my right thigh would bare the brunt of this first injection as I figured it would hurt the least of the four main ‘suggested’ areas (thigh, beer gut, love handle, eye). My MS nurse comes over, goes through the basics with me (because of course, I’ve not read any of the literature that came with it) I ‘scrub in’ roll back the shorts, take the needle cap off and…freeze. After about 10-20 seconds of convingcing myself I stick the needle into my leg and…NOTHING. I didn’t actually feel the thing go in to the point where I have to double check with my MS nurse that I actually got it in. Phew, panic over. Nope, no, I still need to actually put the Copaxone in. So I inject very slowly and then after about 10 seconds my leg muscle does a bit of a ‘Ghostbusters toaster’ and gets down to it’s own funky beat. There’s a little pain, similar to when your muscle cramps up, but otherwise fine. Panic over, for one day at least.

Wednesday 22nd – Todays site shall be my rather ample relxed muscle covering my torso. My MS nurse came over again just to make sure I’m not a complete spaz and I haven’t been putting my needles in anything I shouldn’t. No real problems injecting although it did sting quite a bit where I injected the Copaxone (went a lovely rouge too). I ask Liz to come back the next day so she can make sure Deb can inject me okay.

Thursday 23rd – I rather foolishly pick my love handle for this injection. I had no idea if it would actually hurt when Deb injects me (the other two hadn’t so I just assumed this one would be fine). So under Liz’s watchful eye Deb begins her run up and it bloody hurt. Deb, bless her, was more nervous than me about the whole thing so when I go “OW!” and jerk forwards it really doesn’t help her confidence (Liz though I was pissing about, such is my want). I let her have another go, still bloody hurt, not her fault though. She knows I know that she didn’t mean to hurt me, I’m letting her have another go on my leg this coming week.

Friday 24th – Back to the legs for this one, I still froze a little but slapped myself to do it right this time and had a second attempt. SUCCESS! No dancing toaster leg this time though.

Saturday 25th – Stomach this time with little hesitation. Stung a little afterwards but otherwise not too bad =)

So, five down, just a lifetime more to go. Its not too bad, there’s a slight stinging after each injection, but this is getting less each time =). Just remember kids, drugs are bad, mmm kay

Gav πŸ˜‰

Morning all.

You may have real the post I did a few months ago about the story (epic) of my diagnosis with MS, and now you can watch it too, you creepy stalker you πŸ˜‰

Okay, I tried embedding the video here, but clearly it didn’t work, so to listen to me just talk about, well, me, just go here.

Big love πŸ˜‰ x

Posted by: Gavin Lehmann | July 24, 2009

So which one are you?

What does MS mean to people?

For some it’s that bogey monster that never really comes to get them, but scares them nonetheless

For others it’s that thing under the bed that comes for them all too often

For a lot it’s that feeling of being completely alone in the world

And for the unfortunate few, it’s that annoying relative that just won’t leave them alone, no matter where they go

For many it’s that feeling of being completely helpless, seemingly with no hope or escape

And for the brave ones, it’s that feeling of heading into battle. A battle that seems like there can only be one winner but they will fight until their last breath

So which one will you be?

Will you be the one that chooses to give in?

Or will you be the one that decides toΒ  fight?

Posted by: Gavin Lehmann | July 23, 2009

This is MS 2×02


Still sore now…

Posted by: Gavin Lehmann | July 21, 2009

New video for the newly diagnosed

Hello all,

There’s a lot of scary stuff out there about MS. Hell, it’s scary enough being told you’ve even got MS. I decided to make a sort of ‘down-to-earth’ video for those that are still coming to terms with the fact they have MS. I could’ve talked for four times as long about MS and allayed peoples fears but alas, YouTube only lets you post ten minute videos. Take a look and enjoy =)

I hope thats helped a few of you.

Until next time πŸ˜‰

Gav

Posted by: Gavin Lehmann | July 17, 2009

This is MS, Season 2, episode 1

Enjoy πŸ˜‰

Gav

Posted by: Gavin Lehmann | July 17, 2009

Questions about MS

Morning all, I’m putting together a video for people who are newly diagnosed with MS and need questions that they might ask themselves? I’m going to have a sort of ‘montage’ of questions at the start, so ideally I’d like to have 50 or so I can just sort of mash together on screen (sort of a representation of what most peoples heads were like when they were first diagnosed).

Here’s a few to get you started:

-Are the doctors sure?

-Is there a cure?

-How do I tell my family?

-Is MS contagious?

-Are there any treatments?

-How many types of MS are there?

-Isn’t MS fatal?

If you just add your questions to the comments section, that would be great =)

Thanks =)

Gav

Posted by: Gavin Lehmann | July 15, 2009

#10Ways to Support Charity Through Social Media

#10Ways to Support Charity Through Social Media

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