Saturday 9 September 2006

I feel numb

I went to the neurologist again yesterday. (If you're not sure why, then you can start here and follow the links from there, ok?)

It's been over a year now since I first noticed the symptoms; a year since I woke up that morning, noticed the pins and needles in my right hand and just assumed that I must have slept on it funny. Apparently not. In all that time, the neurologist has resolutely never made a diagnosis - at least not one that he's shared with me. Initially I think that this was because he wanted to see if it just went away, and when it didn't, I think he was waiting for more symptoms to arise so that he could be categorically sure. The nervous system is an amazing thing - if I hadn't appreciated that before, I really do now - and I'm rapidly learning that there's a whole lot of stuff that doctors don't know about it. Why rush to a diagnosis? Why risk getting it wrong? Better to wait until it is really, really clear what the problem is. I suppose I can see where he's coming from, but it's been difficult. Something's changed: today was the first time in any of our sessions that he used the words "Multiple Sclerosis", and he used them three times in all. He wasn't making a diagnosis, but it feels like another step down that particular road.

Last time I went, he told me that there was a good chance that I would suffer another "attack". By this, he means that I will wake up one day and will find that I will have a whole new set of symptoms. I actually had a dream the other day where I had lost the use of a leg. I don't think that in my dream this was specifically due to the WT's, but the dream was about how I was trying to come to terms with this. I couldn't run, I couldn't play football, I couldn't do anything much. My life was being forced to change radically, and it hit me hard. It was a shit dream, and it's hard not to dwell on the fact that this is actually something that might happen. Yes, I know I might also get run over by a bus tomorrow, and I know I can't spend the rest of my life worrying about things that may never happen.... but it could happen and it might happen.

Actually, I haven't had another attack - I may never have another attack - but my symptoms have been getting worse. Exercise is getting harder. I'm still able to do all of the things that I used to be able to do, but they're getting more difficult and my endurance seems to be diminishing. As well as the weakness across my arms and shoulders and the pins and needles in my hands, I have now got some significant numbness down my thighs and on the soles of my feet. C. remarked to me the other day that she could tell that things were getting more difficult because she is now comfortably able to keep up with me in the pool. It's not just exercise either: I went to a party last night, and at the buffet I suddenly realised that my arm was shaking under the weight of the plate. And yes, I do wish this was because I had laden the plate down with oodles of the delicious thai food, but it wasn't.

It's starting to get on my nerves, to be honest.

And today my neurologist decided that we needed to do more than just sit and wait for something to get worse, and he's sending me to go and see another neurologist to get some tests done. He was a bit sketchy on the details, but he muttered something about a spinal tap (oops, there goes an earworm) and stuff like that. He also warned me that this new guy would be likely to start me on some drugs for MS (like beta interferon - which I think is usually administered through injection, and frankly sounds a bit scary, especially as you have to do the injecting yourself).

I'm not sure what I think about this. On the one hand, I reckon that it is a whole lot better to be doing something than to be doing nothing. On the other hand though, this is starting to sound a bit heavy.


  1. I really don't know what to say about that mate. It sucks.

    I've just had a little read about MS [might not be it though], and I can't even imagine having something like that, something which has such a wide range of symptons, and no apparent cause.

    I hope things work out for the best.

  2. I'm really sorry to hear that - anything written in a comments box is going to sound trite, but I'm thinking about you, chum. As one who has had various health scares over the years, I know how hideous the period of not knowing is. And, of course, it's far too easy to spend time online looking up information on sites and thinking the worst.

  3. I hadn't realised the symptoms had continued to get worse since your last posting on the subject but then again I guess the only way you can deal with something like this is pushing on regardless and not dwelling on worst-case-scenarios.

    You have an amazing stregth of spirit and that will stand you in good stead to fight this. That and the fact that you are fit.

    My thoughts are with you mate, keep us posted.

  4. In my experience (diagnosed 5 years ago with MS) most in the medical establishment are scared of saying the words MS as they can offer you no cure. Ask about the specialist MS Nurses they are fantastic, try the interferon drugs they work for some and not for others,I am in the latter group. Stay positive and keep smiling. Your symptoms sound very similar to how I started they sent me for the MRI scan which confirmed the lesions in neck and brain. Always said I was brain damaged. Once you have got the diagnosis then it is a relief to know it is nothing more sinister. I am a thirty something as well, my husband is doing the Great North Run in 3 weeks to raise money for the MS Trust, the search for a cure goes on!!!! Dont forget you arent alone, go to they have chat rooms and message boards.

    All the best for the future

  5. I'm sorry, I hope that you don't accept the old "come back in 6 month crap" any more, and truly push for a diagnosis. I realize that this doesn't help much, but I'm hoping and praying that it's nothing too serious. Please accept some thoughts and prayers from America, and get well soon.

  6. there's not much i can say really... apart from "shit, ST!"

    i was going out of my mind for a week not knowing if I was pregnant or just late, so i can't even begin to imagine what you must be going through.

    but i wish you well mate, i really do x

  7. I've been through a lot of medical grief myself, and its scary to say the least. Especially when the symptoms affect your lifestyle, and reach beyond being a little off or discomfort for a short period of time.

    My thoughts are with you, hoping all works out for the best.

  8. I'm glad that they are giving you a diagnostic indication, anyway. I've known a few people with MS, and the lesson that I take from them is that, yes, your life may change, but never give up living it.

    The first person I ever knew with MS was my geography teacher in 7th grade. He taught from his wheelchair (he'd been diagnosed very young). It's still amazing to me that he had the passion for teaching geography that he put up with 13 year olds day in and day out.

    Whatever I can do from half a world a way, just let me know!

  9. I'm still hoping that he's wrong, that there's some other explanation. If he's right, we'll all be here for you, too. I'm thinking of you...

  10. The idea that it might be MS is a pile of toss, no doubt about it. But you're more than strong enough mentally to deal with whatever is thrown at you, and too logical not to know that some cases of MS are a lot less debilitating than others.

    I don't know a lot about MS but I have just watched the episode of Fame where a dancer has it and is determined to carry on around it unless and until she is stopped by it. (not being flippant, I really was watching it yesterday... that's probably no help to anyone though)

    You have a lot of support, Swissy. We all want to see you well and happy. And if it turns out that eventually means adjusting to a new set of circumstances, then hey, we'll help you through all that as well. In the meantime, try not to dwell on worst case scenarios (easier said than done, I know) and carry on regardless. Hugs of solidarity to you.

  11. My sister-in-law was diagnosed with MS last year. While it has been incredibly difficult dealing with the diagnosis, it is incredibly better than not knowing what is causing weird symptoms. Here's hoping that you get an accurate diagnosis soon! I truly hope that it is something easily fixed rather than something like MS, but if it is MS, you can live with it.

    Hope for the best, and get that diagnosis!!!

  12. Nothing to say really, except that I hope everything works out well.

  13. Best wishes to you. Not knowing must be horrible. Thinking of you.

  14. Hey ST, haven't been by in a while, so dropped in to see what you've been up to. Sorry to read of your woes and I hope that the drugs work for you.

    One of my mates was diagnosed with MS about 15 years ago - she got bad a couple of years back and her personality changed, but she's still working as a nurse (though in a reduced capacity because she's not allowed to lift anymore) and she's still leading a relatively normal life.

    Not sure if that little tale helps or not. I hope so, but I know that success stories of other liver transplants haven't helped me deal with my niece's illness at all.

    My thoughts are with you anyway.


  15. My best wishes to you too even if a bit late. Not sure about what to say, but i hope you'll be fine.