Life, the Universe, MS & Me


About MS for those of you who don’t know
December 2, 2009, 7:05 pm
Filed under: life, MS

I realise that some of you reading this blog are non MS’ers who don’t really know much about the condition. I will now endeavour to explain something about it, but bear in mind that some of this is from my point of view. Everybody’s MS is different. Also if you are an MS’er please feel free to add things in the comments, I am relatively new to it so I don’t mind if you want to point out anything I have missed or said in error.

 

When you get diagnosed you tell your family and friends what it is, well they ask you, but at that point you don’t necessarily know yourself. It can be difficult when most people’s perception of the disease is the worst case scenario.

 

I am also going to steal some of my information from the MS Trust website to help me phrase what to say slightly, they do a marvellous job and you should give them money → http://www.mstrust.org.uk/fundraising/  

 

 

So, where to start, well I suppose I ought to tell you that MS affects young people. Generally its early twenties to late forties but it is known for teenagers and older people to be diagnosed too. I think in the case of older people it may be that the diagnostic tools were just not there when they were young; it is much easier now, what with MRIs and such.

 

I was diagnosed at the age of 24, at the end of May 2008; I have said in previous posts that diagnosis did take a while. MS as a possibility was first mentioned to me in January of 2007 when I was 22, having gone to the hospital when I had an episode of optic neuritis.

 

MS is, according to current theories (there is another in the pipeline), an auto immune disease affecting the central nervous system (CNS). So what happens, well it is thought that there is a group of genes that predispose people towards MS and that these can be activated by environmental factors such as a virus, which can make the immune system attack the nerves.

 

Nerves are covered in a fatty substance called myelin which protects them and has been likened to the covering on electric cables. This is the part of the nerve attacked by the immune system causing de-myelination. This means that the way messages are carried to and from the brain may be disrupted. Where this damage occurs and scarring takes place, relates to which symptoms occur. Above I said that I had had optic neuritis, in that case the optic nerve was the one affected. In relapsing remitting MS, which is the most common kind, the myelin can repair, partly repair or messages can be re-routed around the scarred area (this is the remission).

 

That was the science bit. Now for real life. My personal MS and the symptoms I have experienced will be different to what other MS’ers have experience, the brain is actually a big place so where the scars are will be different in mine that other peoples.

 

I have had optic neuritis a few times twice in the left and once in the right. They are what I would describe as almost entirely better, there is a little residual affect and sensitivity to bright light. I also have a residual affect of when I feel a pain in my eye I wonder if it’s coming back again but luckily it hasn’t for a year or so.

 

My main issue is with fatigue. It’s hateful in both its physical and mental guises. Unfortunately like many other symptoms it is invisible. It is an overwhelming sense of tiredness that goes beyond what most people who say ‘god I’m knackered’ will have experienced. Really you don’t know the half of it. To be physically exhausted is one thing, but I found the cognitive issues associated with the mental side of fatigue slightly worse. I have sat at the till at work on several occasions and people have handed over their money and I have looked at it and thought, ‘what’s this I know it means something’. Ok, so it may have only lasted a few seconds before I sorted myself out, but it was damn scary that I couldn’t work out something so ingrained in our lives. At Uni I read a book called ‘The Meaning of Things’ I understand the intrinsic value that objects have, its frustrating.

 

Still it wasn’t as bad as the conversation I had where I didn’t realised until afterwards that every time I had intended to say yesterday I had said tomorrow. Shame I was being told off at work at the time because some numpty forgot to write down that I had a hospital appointment.

 

Ok so I have tablets that help stave that off now. And to say I loved them for existing would be an understatement.

 

My other issue is with pain. Until quite recently MS was considered a painless condition. How, I don’t know. I get pain in my hands often this is called I believe neuropathy; I have also had it in other areas. I have pills for that too, I am only on a low dose so I do get a bit of break through pain occasionally during the day. Its manageable but can take me by surprise. I have lately had to increase it though because of a burning sensation around my ulna nerve. Still it’s good I have somewhere to go with them if I need more.

 

Other than this I can get cramp and stiffness and have a few twitches. These are my day to day problems. I have had other things in the past too. I do the best I can.

 

Please feel free to ask me questions, leave comments or tell me I have it all wrong.

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6 Comments so far
Leave a comment

I had no idea what MS was.and I won’t pretend I understand it now. But I can never begin to imagine what you are going through, and how extremely strong you are to face this and tell the world.
I will follow your blog with interest and the hope that I can understand more.
You have my heartfelt respect. X

Comment by Irene (hallmork)

probably could have explained it better then lol xx

Comment by helen1984

same here, i can’t think for a second how it must be, it’d poo my pants a bit if i didn’t have control of my own body and mind for a bit, i understand it a lot more now, i knew what i was slightly but I understand it more now. thanks for clearing my thoughts on it 😀

Comment by coocumber

Wonderful as ever, Helen. The best explanation I’ve heard for…well…virtually any medical condition.
It is the times I hear about things (medicines, nurses, etc) that actually make some kind of a difference to real people that make me proud to be going into this profession. I know we don’t always get it totally right (especially 1st time!), but thank you for the appreciation of when we try. 🙂
I am trying to find out more (from a doctory/research perspective) about the venous insufficiency stuff, but until then, you have completely nailed the current theory behind ms. In this, I believe you are light years ahead of many of the people I see on a day to day basis with other conditions.
Thank you again for this incredibly brave blog.
Love xxx

Comment by TheMagicOfMedicine

Well Done Helen – excellent. I wasn’t diagnosed until I was 43, it affected my hands and feet and crept up my legs which felt like all my clothing was damp and I was sitting on airbags Couldn’t walk for a week. Also had the MS hug (transverse myelitis)which made taking deep breaths difficult. MS is certainly different in every sufferer. Glad you’ve joined us MS bloggers at last! Jen -x-x-
PS Thanks for increasing the font size its much easier to read now, but the comments are still too small so increased size a bit through the View option.

Comment by Jenny Harrod

During our 2 years and counting in hospital with Sophie we have met many MS sufferer who we have become good friends with as they have helped us deal with Sophies condition. It’s a cruel illness and one not worthy to be alongside good people. I wish you the best of health and wishes. Andrew

Comment by Andrew




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