Colleen Displaced

one ordinary woman -vs- Multiple Sclerosis

Tysabri - a repeated post with update

I am reposting the piece below because I have added an update to it, I think it's important for us all to take control of our own health - it's a personal choice of course, but I am finally very choosy about who my medical supports are, it really is important to be monitored by someone who sees each patient as a priority.



Previous article (September 2016) 

It's typical for me.  Just when things are looking up, I'll do something, and that 'something' will completely screw up everything that was going so well.  

What am I waffling on about?

Oh, just another dumb annoying thing I did.  I already told you about it, the falling over thing.

BUT.  What I hadn't gotten round to writing about, before that happened, was ... I had one episode of being able to walk for about an hour, WITHOUT assistance.  Like an ordinary person.  Like I used to.  Like, I didn't need that stinkin' walking stick.  Read that again.  I'll wait.  I didn't need that stinkin' walking stick.  I typed it again, I don't trust anyone, sorry.  Still friends?  Thanks (insert warm smile here).

I have to backtrack a little.  Back to my neurologist visit (rewind whirrrr whirrrr screeeeech!)

So, we were having this long discussion about chemotherapy and stem cell treatment overseas, and of course about my current treatment and new drugs on the horizon.  At that time, less than a month ago, I wasn't happy with what I was being treated with, which is Tysabri.

I have an infusion of Tysabri once every four weeks. Started it in February this year, so about seven months now.

I seemed to be getting worse, little by little, month by month.  And I said so.  My neurologist's response?  'For some people, Tysabri takes a little longer'.

I didn't believe that.  Far as I knew, nothing worked.  Yeah yeah there's a whole lot of researchy type people out there saying that this works, or that works, or this with that works. Afraid I didn't believe much of any of it.  So anyway, I tucked that little 'Tysabri takes a little longer' nugget of information safely away in a quiet corner of my MS-addled brain.  Figured I'd just forget about it,  might as well just stick with it.  Better the devil you know, and all that.  For now anyway.

And then, just a few days later - it happened.

I woke up, I felt good, and strangely different somehow.   Hubby had to visit his doctor.  I tag along.  I'm walking. Without hubby's arm.  Without my walking stick.  Up a sloping path, down a sloping path.  Silently.  Thinking I'll wake up soon, this has to be a dream.

We get back in the car and head to the supermarket.  I browse. I let hubby push the trolley, I don't reach for that support.  I compare prices.  I compare ingredients and nutrition levels of different brands.  Like I'm some sort of purposeful shopper. Like I actually care about what I'm buying, like I want good value and stuff like that.  We fill our shopping trolley, way up to the top.   We get to the checkout.  This has not been my usual shop, 'usual' is just grabbing the first thing that looks like what we need, and chucking it in the trolley, 'that'll do' is my only shopping technique. And let's get out of here quick, before my legs give out on me.

But not on this day.  This day I am missusnormalwalkingpants.  For at least as long as it took to visit a doctor and then buy a trolley full of groceries.  I was in heaven and I was happier than happy.  

Of course it faded away when I got back home and the familiar weakness began creeping back, but it was possibly a sign that things were about to improve.  Only time will answer that question, until then I have hope.

Back to where this began ~ and then of course I had that fall.  No bones were broken, which is a very good thing.  Still recovering.  A sore ankle, which means I limp because of pain and bruising in that ankle, not because of my spazzy leg. Which is sort of comforting, a sprained ankle is a normal kind of thing, you see?  I'm normal again.

I can almost fake that I walk this way because of the sprain, not some awful neurological disease. Well, maybe.  I think some people are fooled, not everyone mind you.  But my left leg truly hasn't been spazzy since my ankle sprain.  

Is it because Tysabri is working now, after seven months?  Maybe.  The jury is still out on that, but I will of course keep everyone posted.

I'd appreciate your kind thoughts, and some good healing vibes, if you could send my way - I really can't wait for my ankle to recover!

All for now, have a great day!

UPDATE:  January 2017, 4 months since writing this post about Tysabri (and after deciding on HSCT) I'm sorry to say that my hope of Tysabri-induced improvement was foolhardy.  I have taken much better note of what happens after each Tysabri infusion - and realise now that each infusion brought a further complication or difficulty, it's subtle but definite and I am less able than I was back in September when I wrote the post above.  I now know that this is what was happening since beginning Tysabri.  Almost monthly calls to my neurologist after each infusion, because of new 'symptoms' and being placated by 'oh you're having a relapse' or 'it just takes time' finally took their toll, and I am quite honestly hurt at being treated like a fool, getting worse is not something to be ignored, by anyone.  So I am in charge of my condition now, and that's it.  I see a new neurologist, who already has put in place many supports for me. That one episode of 'normal' remains a mystery, but gives hope that at least my body can still work normally, but only when MS turns itself off - and if I think that way then there's much confidence in HSCT, so I continue to wait patiently for Russia.



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