Maggsbunny

Blogging Bunny-style

A learning curve.

with 4 comments

I have been way too hard on myself, I really have. I always try and pretend (even to myself) that I am this huge, over-the-top bunny-hugger, rejecting medical science to my own detriment.

Well, NEWSFLASH. And this is more for my own benefit than anything else. I think I should pat myself on the back, instead of constantly pretending I’m not doing a satisfactory job in the decisions that I have made in the past.

I tried the alternative side of things. I still do. I’ll try anything. But on the whole, I have relied much more on medical science. I’m on drug trials, for Heaven’s sake! How much more involved with medical science do I want to be?

My initial relapse (the one where I was diagnosed) was treated with IV cortisone. Mind you, the doctor told me I potentially had a tumour that could restrict my breathing at any moment. (Come to think of it, that wasn’t very ethical of him. Considering how far it was from the truth.) The steroids worked like bomb. I was later to discover that they don’t work that well for everyone, so I’m one of the lucky ones.

All was well for a year and a half. Then I had my second relapse. But by this time, I wasn’t the complete ignoramus regarding MS that I had been. I’d been reading. Yip. Mostly Judy Graham’s (excellant) book, MS – a guide to its management. Judy herself has had MS for years and is doing very well, using all sorts of alternative therapies as well as sticking closely to the classic MS diet. This gave me enormous hope, and I had been following the diet faithfully for the year and a half prior to my second relapse.

Then I got the relapse. I went and saw a homeopath, hoping for something gentler than the steroids. I was given a two week program of homeopathic injections (allergostop) to go on. They didn’t help. (In retrospect I know why now. Those injections work on the premise that one has allergies, one of the causes of MS, which I didn’t and still don’t. But I didn’t know that at the time. Hindsight, 20/20 etc.)

So the injections didn’t work, if anything made it worse.

Not only that but the homeopath had really scared me about taking cortisone, telling me all sorts of horror stories and telling me some of the side-effects were so bad he didn’t even want to tell me about them. But being me, I looked them up as soon as I got my hands on the internet. Enter AVN, which I am not even going to discuss because it creeps me out so much. It scares the sh*t out of me every time I have to go for steroids.

So I was scared, but that wasn’t the whole of it. I did research, both on the internet and an actual live specialist doctor. Apparently it made no difference to the eventual outcome (disability wise) whether one treated with cortisone or not. It would speed up the recovery but wouldn’t influence it otherwise. Exact same end result This was told to me by the specialist doctor with absolute authority. And though it didn’t make sense to me, I assumed that he knew what he was talking about. I never again trusted a doctor’s opinion over my own common sense. That was the last time. (Even back then, I double-checked on the net and the concensus was the same as the doctor’s).

So, I waited three months before taking the meds. Three long, difficult months that cost me my job and my degree. I followed the diet all the while, but as food allergies were not my problem, this made not an iota of difference.

Eventually, after trying various other therapies, I capitulated, and booked into hospital. After the IV ‘roids, I recovered quite well, but would retain a certain degree of disability. Not too harsh, but noticable to myself.

After that the relapses came with ever increasing frequency. I didn’t tarry too long before going for my tried and tested treatment. After deducing that it was a bona fide relapse – off I went. But then the relapses starting getting too close together. Eight months apart, then six, then four. My doctor would not allow me to have IV solu-medrol only four months after the previous dose. He told me to wait another two months, at least. If I had known how aggressively I would go backwards in those two months, how traumatic it would be and how long it would take to regain a semblance of normality, then I would have taken my chances with the meds.  I would have risked an opportunistic infection. How paltry that sounds now, compared to what did happen to me. I became severely disabled. Bedridden, unable even to transfer to a wheelchair on my own without help. Because of avoiding a possible infection and osteoporosis somewhere down the line. I could have sworn we lived in a time where there are antibiotics for infection. Oh wait, we do! There are serious side-effects with the cortisone, but none as serious as what I went through. Well, in my opinion. Maybe I wouldn’t have felt that way if I’d actually gotten one of them.

This is fast becoming a very emotional post, but it is a big step for me to realise that I wasn’t to blame. There is a way of thinking in medical circles that because MS is uncurable, I think some doctors sort of write you off. Which is why it’s so important to take an interest in your healthcare and find what works best for you as an individual. There are  more choices than ever for PwMS now.

Anyway, after that whole episode, I knew I had to make a plan. I did extensive searching on the internet for a solution and found it. There were unofficial trials underway where IV cortisone was on a sort of maintenance basis. The patient received only 1 gram but every month stopping a relapse from ever really getting off the runway. I starting applying this method but only when I felt a relapse coming on. To my surprise and delight, the one gram was enough to stop the relapse completely. So every time I relapsed, which was every two months at first, I medicated with one gram. The relapses started getting further apart again. I was vigilant, and didn’t allow any damage to take place before I medicated. It was a turning point in my walk with MS. Of course, this was not taken well by the neurologists, who of course knew better. I didn’t care. It was working for me, and I found me a tame GP who would prescribe the one gram for me when I needed it.

Fast forward to 2007. This is when I happened upon the info for the trials for a revolutionary new oral drug for MS. I managed to get onto the trials and have been going from strength to strength ever since. I’ve also managed to rehabilitate a great deal of the injury that I had to my brain and spinal cord, and it has been hard work.

Looking at all this objectively, I can’t work out why I have been so hard on myself, but it stops on this very day.

My current neurologist filled in a part of the puzzle recently when he told me that back when I was diagnosed (circa 2001) it was a commonly held belief in the medical fraternity that cortisone did not effect disability outcome, only length of relapse. So, yes, I did wait it out that time, but it was based on so-called medical facts of the day. I did it in my best interests, just like I make all decisions re: my health.

I also gave the inteferon medications a fair trial, so I utilised the best on offer at the time. Actually I shouldn’t have any regrets at all. The outcome has been quite satisfactory. ‘Specially compared to how it could have gone.

I’m not quite finished on the subject but this post has become so long that I think I am going to continue it tomorrow.

G’night all.

Written by Maggie

January 24, 2008 at 8:44 pm

Posted in Uncategorized

4 Responses

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  1. You did the best you could with the information you had. Just that.
    You have trusted yourself and have gone out of your way to get as much information as possible to base your decisions on. I’m very proud of you for that

    Melany

    January 24, 2008 at 9:48 pm

  2. Magdalena, Wikipedia has MS as its main article today – http://en.wikipedia.org/wiki/Main_Page. More reading! I so hope these trials are going to wrk out as well for you as what they presently appear to be doing.

    Meldad

    January 25, 2008 at 7:12 am

  3. Maggie I take my hat off to you girl. You are so brave and so much guts. I wish I had half of that.

    Love

    Mom

    Marié

    January 25, 2008 at 6:41 pm

  4. It’s been so long since I’ve had relapsing-remitting I don’t even remember what it feels like to “feel a relapse coming on”. Do you know if the drug you’re on is only for RR, like most are? I sure would like to see something going on in the world of progressive MS. By the way, I have to say, IMO I think your swimming and exercise has played a HUGE ROLE in your doing so much better! Movement regenerates myelin! You’re doing so fantastic, I am so proud of you. 😀

    Donna

    January 25, 2008 at 7:35 pm


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