Friday, 27 September 2013

Autoimmunity part 5 - limbo without the fun music and my new friend Hughes

I've been holding out on you, dear readers, on the latest instalment of the adventure that is my autoimmunity. I'm not one for cliff-hangers and hate when my shows break up for the summer so I decided not to give you half of a story without a resolution, but now that I have a resolution I figured you might like to hear the whole story.

Remember in July when I found out that I was stupidly taking medication for one problem which was completely contraindicated for the other? I had been taking the birth control pill for my polycistic ovaries but shouldn't have been because it increases blood clotting and I carry antiphospholipid antibodies. Then all through August I had fatigue and it got me thinking.... What else do those antibodies mean?

I did some net-research (never recommended by the way... Make sure you cross check anything you discovered on line with your doctor) and realised that maybe the fatigue and headaches and vision problems were never related to my connective tissue disease, maybe they were connected to the antiphospholipid antibodies and a clotting disorder called Hughes Syndrome, sticky blood or APS. Maybe I had had a stroke and not known it. Maybe when I blacked out in a health-food shop in Grenoble in May I had really had a mini stroke. Maybe when I lose balance it's because oxygen isn't getting to parts of my brain because I have blood clots!!!! Maybe I can't feel my arms and legs sometime for some neurological reason. Maybe I have the neurological manifestations like MS that APS can provoke.  Maybe maybe maybe. I thought maybe I'd talk to my immunologist before going crazy.

And he said maybe I was right. 

Now, if I was into cliffhangers this is where I would have left you on September 10th. Instead I'll tell you how the MRI went.

I think the hardest part of the MRI was waiting for it for the two weeks. I was very worried that I would feel claustrophobic in the tube or panic or move and they'd have to start over. I was worried that it would take a log time and what Sera would do in the waiting room. By the time we actually got to the waiting room I was really worked up and was yelling at Sera and hubby repeatedly. A kind nurse showed them to a room full of toys for Sera to play with.

I wore clothes with no buttons or zips so that I wouldn't have to take them off in the machine. They made me take them off anyways and that made me feel vulnerable and sad. I waited in a hospital gown outside the room on a cold metal chair while a couple of off-duty doctors gossipped across from where I was sitting. It made me feel vulnerable and sad.

The technician who put me in the machine was kind and I was ready to relax and try to use my meditation breathing techniques inside. I closed my eyes as the table set up. I was given headphones to 'protect my ears' but they were horrible and didn't help with the sound at all.  

The sound. The sound was insane for lack of a better word. Not scary but shockingly loud to the point of exaggeration. It seemed impossible to me that the sound I was hearing was just a consequence of the machine doing its work and not some joke by a sadist. It seemed completely ridiculous the randomness of the patterns of sound. Some people say it sounds like a jackhammer or drill, but it's quite a bit more guitar like than that. It's heavy-metal strumming. It's a concert with one instrument. It's random and on purpose. It's mathematical in the same way the universe is.

You may note that I had quite a profound voyage while pondering this sound inside the machine.

And then it was done. 

Having not moved a muscle for 35 minutes it took some time for me to get moving and to get off the table. As I was doing so I realised that one wall of the room was glass and behind it was he technician who was currently looking at the scans. I was suddenly embarrassed that I wasn't moving faster, that I needed the extra seconds to get my body moving.

I cried in the 'dressing room' which was actually a supply closet.  It may be that I was having a flashback to my post-partum experience (if you're interested I'll tell you about that someday) or just because I had two weeks of stress anticipation to get through and was relieved it had gone well and was over. I was so happy to get back to Sera and hubby playing happily in the real world.

I got the results so much sooner than I expected. I went to the pool with Sera the next day because I finally felt like getting on with my life and My immunologist called just after I got home.  
The scans were clear.


for those of you who wonder what's going on in my head.
That's actually how I look in profile!
My doc and I have decided to start treatment for the antiphospholipid antibodies despite me not having had a traumatic event regardless. Having clear scans now doesn't mean I haven't had a transient ischemic attack in the past and doesn't mean I won't have one in the future.  It's unclear why some patients with APL (the anitibodies) have 'events' and why others don't. I guess I'm just lucky for now.  I don't currently have APS but do have APL so that's enough to take precautions.  I contacted someone at the Hughes Syndrome Foundation in the UK and they confirmed that I should be treating my disorder now as a preventative measure.  It means I will probably be on blood thinners for the rest of my life but on the upside those same blood thinners may help with my eyes and fatigue. The Hughes syndrome foundation claimed that it may help with my joint pains and digestive inflammation as well. 

I'm feeling wonderful because not only do I not have any damages but I am also on the road to feeling better with a new medical regime and diet.  No cliffhangers here.... Let's hope that we don't have to sit through another episode of 'autoimmunity' for a very long while.

For more information on APL and APS/Hughes Syndrome visit the Hughes Syndrome Foundation's fantastic website.

For more posts on autoimmunity click here.

No comments :

Post a Comment