Yet another MS blog…

There’s a lot of MS blogs. I can’t promise that this one is going to be any different or groundbreaking. I did a whole series of Facebook posts for MS Awareness Month, and it seemed a shame to lose them all.

This will be a place to record those posts and flag up anything else that happens. And there’s always something that happens…

It’s a record of what has happened to me, my symptoms and my choices for treatment. Every case of MS is unique, with no two people the same. It stands to reason that all the choices people make to treat their disease would be different too. Each to their own!

Fatigue for Lacey and me!

MonthStill??? This is the longest month EVER!

Today I am so so so damn tired. The trip to the neurologist takes it out of me. Lacey went to the kennel and has come back tired too. She has been under the table since she got up. I’m in my recliner. The photo is grainy because I don’t have the energy to get closer to her!!! She looks how I feel.

As you know, I have been to my neurologist. He is always open with his thoughts on various treatments in the pipeline, and he explains his thoughts on them very clearly.

The rest of this post is research…science-y stuff, but in my language. If you want to read it in more detail, you could start here: https://beta.mssociety.ca/research-news/stem-cells

Early in the month, I had mentioned stem cell treatment very briefly. I’m going to fill in some more details today based on the conversation with my neurologist.

Back in 2000, there was a major stem cell trial started in Canada, one of many around the world, into a type of stem cell treatment called HSCT. It was involved using bone marrow stem cells to reboot the immune system. It is extremely aggressive, and required such high levels of chemotherapy that there was a 1 to 2% death rate, and some people on the trial had severe side effects. However, the results for those it worked were excellent, so work continues.

The new work concentrates on reducing the amount of chemo needed, therefore making it safer, but that also made it less effective. And in the years that have gone by, range of different drugs have come that are doing a similar job, in a similar manner, more safely.

The new trial on the block, however, is MESCAMS. Here’s where my talk with the neurologist comes in. This is what he calls the game changer – if they can make it work. Instead of the wipe out and reboot approach, it’s trying something different. No chemo, but send in a type of stem cells that are repairers! They go in with their tool kits and fix the previous damage! Nowhere in anything I have posted have you heard me talk about things fixing the nerve damage.

If it happens, and it won’t be quick, it’ll be very exciting!

One word of warning. You can go to all kinds of places and pay all kinds of money for stem cell treatment. It’s all bogus. I read one the other week that said it would inject the stem cells from fat in your stomach (of which I have built up quite the supply from my chocolate research) wherever you have the problems… including your eyes!!! Don’t do it, people!!!

  

New directions from my neurologist appointment

I know that lots of people have had poor experiences at me time or another with their doctors over the course of their MS, and as I’ve written before, I too have had that experience.

My current neurologist is wonderful. Absolutely wonderful. My 30 minutes appointment yesterday again lasted for an hour and 15 minutes! We covered a wide range of topics and finally came out with a new plan of attack for part of my MS. A new Disease Modifying Drug. My current one is doing its MS job well but giving me a few infections that concerns him.

Last year my neurologist told me that he didn’t understand why this new drug he wants to try, Aubagio, is on the market, as its statistics in reducing the rate of relapse were about 30%, low, and at the same level as the drugs from 20 years ago. Now they have seen that something different is happening. Either the rate is 0% or really high, like 60%. Quite simply, the wrong average was used! I know many of my former Math students will share my horror!

Road trip in reverse today. A lot to think about. Changing drugs always brings ups and downs, and some adjustment. I’m sure there will be more from me on this in the future!

Road trip!

A quick post today as I’m on the road. I’m off to UBC Vancouver to see my neurologist. Only a 5 hour trip down there, an overnight hotel stay and driving back the next day.

Travelling is exhausting. My usual routine of being in my bed by 1pm by the very latest is upset. I don’t get the quiet rest and sleep that I usually get and I’m surrounded by far too much stimulus. We don’t even put music on in the van any more, as it’s just too much for my brain.

Having the van and my chair means I can tilt my chair back and get some sleep that way. However, being in a vehicle and having to use all those muscles you never think about using every time the van goes round a corner or hits a bump is exhausting. I just can’t explain it.

However, the weather is gorgeous and it is great to have a change of scenery. Road trip!!!

#TakeThePledge to #EndMS – World MS Day Part II

May is MS Awareness Month and today is World MS Day!Today we Took The Pledge! ‪We joined ‪#‎TeamFight‬ ! We were 3 councillors (one deputy mayor) 4 board members, one person with MS and one friend! If you go to endMS.ca you will see there are a number of ways to choose to join Team Fight. One is to sing O Canada in a public place…so we did! At the bear statue in Downtown Kelowna while being recorded for the local news!

I challenge you all! Canadians and non-Canadians! Go to http://www.endms.ca and #TakeThePledge and send me a photo! You can wear plaid, eat an XXL poutine or eat maple syrup in all 3 meals in the day, if you don’t fancy singing!

   
 

Getting an accurate diagnosis – World MS Day Part I

Happy World MS Day!

In honour of this auspicious occasion there will be two posts – first, this one, a serious one, and then later a reporting on our World MS Day event!

This Guardian article reports on an article from the UK MS Society that 4 out of 5 people with MS are misdiagnosed. Shocking, eh? But not surprising. Many of the early symptoms can seem pretty benign when described – tingling here, pain there, feeling “really tired”. It’s only when things become more severe and clear cut that a diagnosis can be made, unfortunately. The additional stress that this places on people who know there’s something wrong but can’t get any one to join the dots is huge. And stress is bad for MS. It also leads to depressive thoughts, feelings of low self worth when you’re just too tired to do what the family want you to do, that you take another day off from work and you worry what your co-workers think of you.

My own diagnosis was pretty straightforward, as I’ve already written about. Feelings start on Monday, can’t walk properly by Thursday. Anyone who knows me would know that this is probably the kindest thing MS has done for me. I don’t think I could have dealt with the slow drip drip drip as well.

It’s easy now to look back and see other clues. Of course I have always liked to sleep. A lot. And there are very few people who haven’t witnessed me falling over somewhere, for no reason at all. Ian always said I could fall over a blade of grass on a flat floor on calm day.

Then there was the time I passed out at my first grad ceremony in Kelowna, on stage, in front of 500+ grads and their family, which of course started the gossip flying. I’d lost a lot of weight – eating disorder?!? Pregnant?!? How to make sure the ceremony is memorable…

http://www.theguardian.com/society/2015/may/27/four-in-five-multiple-sclerosis-sufferers-in-uk-are-misdiagnosed

No room is left untouched…

I had an idea for today’s post, continuing the equipment theme, and then another friend with ms gave me another idea that tied the two together.
Bathrooms are hard to photograph, but in this you can see three of the main pieces of equipment I have. A chair in the shower. I sit on the side of the bath and slide back on to the chair. Ian has to lift my legs into the bath and then get the water sorted out for me. At the end of the shower, he dries me off and has to get me out.

The raised toilet seat is to help me transfer. The big white thing is a pole to help me transfer too – and I have one at the side of my bed! Yes, a floor to ceiling pole in the bedroom!!! On bad days, Ian has to help me transfer on and off the toilet too.

Which brings me to the suggestion – dignity! Having a chronic disease such as MS robs you of your dignity. Constantly having to ask with the simplest things up to the most intrusive things. Having every procedure and test known to the medical system. As another dear friend once said “I’ve lost so much dignity, it would save time if I just started to strip off in the doctor’s waiting room!!!” Every time she says she has a medical appointment, I smile and check the news carefully to see if she was arrested…

Ian plays a massive part in me managing to maintain some dignity. They all become tasks that are just part of life for us, but still, it’s not a situation we ever wanted to be in. For many people, they don’t have family members to do this for them at home. Instead, it takes people like my cousin who works as a full time carer, to try to help people keep the dignity that the disease has taken away from them.

The pole next to my toilet to assist me to transfer