Uncharted Territory

I am so excited to be writing this post!

This morning I had my appointment with the immunologist who is overseeing my steroid infusions.  We went through all of my symptoms; what has improved since the infusion, and what has stayed the same.

I am able to drop one of my medications!

But that was only the start of the good news.  He is pleased that I have had such a positive response to steroids.  He wasn’t expecting it.  He said that if I hadn’t, my options now would be severely limited.  But I have!  And I am starting to really believe that a different outcome might be possible.

Taken as a whole, the last three weeks I’ve felt better than I have in the six years since I first got hit by a nasty virus (let’s call it the ‘thing’).  Even feeling a little better would have been a win.  But I have felt, overall, a lot better. Better even than an improved sense of wellbeing, is that some of my autonomic dysfunction is also better.  Of note, I’ve been less dizzy, I am no longer constantly nauseous, my post-prandial bloating is reduced and I have had better (though not normal) bowel and bladder function.  I can sweat in some places that I couldn’t sweat before. And my fingers, three of which on each hand, didn’t wrinkle in water before steroids, now do.  In addition, the neuropathic pain in my extremities, hip, pelvis and left leg are vastly improved.  We haven’t checked my pacemaker statistics yet to see if things have improved there, but that will happen over the next few weeks.

My specialist explained that this response really puts us in uncharted territory.  A positive response to immune suppressants, means that the ‘thing’ I have has been attacking my autonomic nerve conduction and pain receptors by switching on an immune response in the wrong place. This immune response is suppressed by the steroids.  Because the erroneous immune response is suppressed, my body is functioning more normally.  This may indicate that nerves we previously thought were permanently damaged may, in fact be okay.  Which in laymans terms means I might be able to improve my autonomic nerve conduction and pain with immune modulation.

It means I am a better candidate, on paper, for further treatment.  So the next step is for me to see all of the specialists in my team.  I will go back to the other immunologist, my neurologist, my cardiologist, my urologist and my gastroenterologist.   They will provide their opinion on my function mid-steroid therapy.  If they concur with the immunologist, that this steroid response is good news, there will be more treatment options available to me.  I am so full of gratitude and joy.  I am not sure if I can properly explain.

Instead, I will let the pictures do the talking.  The photo on the left shows me on a typical morning before immune suppressants. The one on the right, I just took, standing in my kitchen after climbing my own stairs;  after my appointment this morning.  I feel good.

Who's That Girl_

Me, that’s who!
The Me I am meant to be!

IMPORTANT:  Every patient is unique.  The causes of Dysautonomia are varied and complex. If you suspect that you have an auto-immune variant of Dysautonomia, please seek the advice of an Immunologist.  Their recommendations for you will be based on your own medical history and individual situation. I do not claim that Pulse Steroid infusions are a cure for Dysautonomias.  It is still early days for us in my six month course of this treatment.  Continued efficacy of this course of treatment is our hope, but as my specialist said, we really don’t know what will happen next.  We are thankful that it opens up further treatment options.  We are particularly hopeful that the 20% chance of remission will be odds that fall in our favour.   And of course, I sincerely hope that if you have been battling with Pandysautonomia in a similar way to me, you will be able to explore what this might mean for you.  I wish you all, at the very least, the same experience I have had so far.

Life is a beautiful thing.  Don’t give up!

Out of the Woods?

Screen Shot 2015-02-03 at 10.48.21 am

I’ve been listening to my daughter’s Christmas CD in the car this summer.  I like it when the kids like music that I like too.  It doesn’t always happen! My son is into The Scat Man, and although the sentiments are lovely (think bad rap: I wanna be a human being/ not a human doing/ I couldn’t keep that pace up if I tried/  But if part of your solution/ isn’t ending the pollution/ then I don’t wanna hear your story told…) the relentless scatting and boppy beats drive me crazy.  So, given the alternative, my favourite track on Bee’s CD is a song called Out of the Woods.  It’s here:

Taylor Swift: Out of the Woods
(this was filmed right here in New Zealand, I like that)

I love this track so much.  It makes me think of the things that are going on in our micro world at the moment.  My early fantastic flurry of a response to steroids, my more recent dip back into some of my less fabulous symptoms.  It’s a rollercoaster hope ride. We’ll see the immunologist again tomorrow.  In 24 hours I will know if he thinks my response is a good indicator for a next step. And I’m rolling down the track, thinking “are we out of the woods yet?  Are we in the clear?”

It’s a catchy set of lyrics, I like the repetitive mantra.  But what makes the song really something is that beautiful line somewhere in the middle.  The writer and her partner are in the hospital, after a frightening experience, they’ve been in the metaphorical woods, when:
“the monsters turned out to be just trees…
and when the sun came up
you were looking at me”

I like that because it makes me think about my man. The road has been treacherous and difficult.  There are scary things around every corner. But when the sun comes up, he’ll still be looking at me.  🙂
Thanks BobbyD.  I’m glad to be navigating these woods with you.

 

Treat Me

Last year on the 24th October, I wrote a post for the Living with Bob blog.  Michelle hosted guest posts on her site to mark awareness month for Dysautonomia. It was the first post I wrote about my frustrations with a doctor. I usually get along great with doctors, but occasionally their pre-conceptions get in the way.  Sometimes it is their egos or their ignorance in the way.  This afternoon I saw a very clever and very personable immunologist who specialises in neuro-immunology.  I didn’t even know we had such a rare-feathered-fella in New Zealand.  But we do!

He took such a long history from me that I had to ask if I could lie my head down on his desk!  A few years ago I would have been too embarrassed to ask if I could do that.  But I’m a bit more vocal these days.  He was a very good doctor.  And he even unlaced one of my converse high tops and pulled it off my foot when I needed to get up on the table to be examined(!)  Far out.  Didn’t know that was included in the service!  One bloke on each foot, taking off my shoesies!

The news is that he wants to try me on a six month course of immune modulation therapy.   He is just getting all the paperwork in order and discussing it with his colleague.  He’ll get back to me.  I had to double check with my hubster as we left that he really did say that.  Yep, he really did.  I was amazed too, at the beginning of the consult, when he asked me why I was there, I explained that I have a list of possible causes and I can’t rest until I know I have checked them all out.  He thought that was “fair enough”. It amazes me that some doctors understand why we continue to search for answers and others don’t at all.  Then he went through a paper with me from one of the world’s best Autonomic Neurologists.  Steve Vernino.  He knew who Dr Vernino was (that’s a first)!

I think when I wrote a few weeks ago: ‘catch me I’m falling’… I got sent a few doctors to do just that.  I am so grateful.  For me, but also for others with Dysautonomia in New Zealand. If this story has a positive ending, it will raise awareness amongst the medical community and make a difference for how patients are treated here.

This is my piece from last year:

Sweet Thing

source: worldsweetshop.blogspot.com
source: worldsweetshop.blogspot.com
 

In the past couple of years, my care has been transferred from my Cardiologist, to the General Medicine department of our local hospital.  My General Physician is a specialist doctor who coordinates the other specialists who care for me and they all consult with him as the primary doctor who oversees my case.  In addition to the General Physican, I have seen a Neurologist, a Neural-Opthalmologist, a Gastroenterologist, a Cardiologist and a Urologist. They all see me through their out-patient clinics unless I happen to be admitted for something. I really like this model.

Until recently, my Main Doc was a really lovely, really clever, experienced physician who was involved, interested and not afraid to admit that he needed to find out more. He wasn’t threatened by me, or my lists, my folders or my frequent email attachments.  He wasn’t even threatened by my six foot frame and it’s wobbly instability.  He understood that I wasn’t trying to be an annoying patient.  I was just trying not to be a patient at all. He suspected that I have AAG.  Autoimmune Autonomic Ganglionopathy.   The idea is that the immune system has turned against the Autonomic Nervous System in error.  It begins to pick off autonomic ganglia, preventing the usual messages from getting through, throwing out homeostasis. And this thinking meant that he was open to the idea of my problems being treatable.  That concept, for me, for anyone facing a progressive illness, is the equivalent of being a kid in a candy store. Treat me!  It’s the nirvana of chronic illness. The delectable hope! Shiny, sweet gorgeousness!

But oh! There I was in the candy store, staring up at the jars, salivating. And it occurred to me that I couldn’t just buy what could make my dreams come true.  I didn’t have any currency. The benevolent gentleperson with all the buying power was about to leave the store.  And he did.  The hospital moved him into another department and transferred my care to a new General Physician. One who hadn’t gone through the lengthy discussions with me about the candy and the possibility that maybe, I’m worthy of having a bag of bulls-eyes (immune modulation therapy). My new Main Man prefers the sit-and-wait approach. Main-Squeeze and I at first, politely inferred; then, referred directly to the last doctor’s findings, suggested and finally pleaded for some more action, some attempt or nod towards trying.  He just took off his glasses, said we need to face some realities. Sat back and said that he would like to simply ‘watch’ my progression. Candy shop shut.

The research in this area shows that if indeed I have AAG, the nerve damage that continues to occur over time is unlikely to be able to be reversed.  So I don’t want to wait while he observes more progression.  I want to arrest the progression.  I need to, in point of fact.  Because, like all of my fellow sufferers, I have a life that I need to get back to. A husband who wants a partner in every sense of the word.  Children who need their Mum in ways and at times that I can’t always be there for them.  And a host of other brilliant things that are out of my reach with things the way they are.  Things that would have been, if I hadn’t got sick.  I’ve got some potential to fulfill.  And although the new Main Man doesn’t know it, I am worthy of the attempt.  Aren’t we all?  There aren’t very many of us.  It’s not like there’s going to be a mob looting that candy shop.  And we are very polite, on the whole.  Except for inside our imaginations, where occasionally, we slap people who don’t want to try to help.

I don’t have the antibodies which prove AAG.  In fact, 50% of AAG sufferers don’t.  But there is still a good chance that I would respond to immune modulation therapy.  So, I am standing in the candy store, alone.  Looking up at that candy.  Just wishing that this new doctor would come striding in and say “A bag of bulls-eyes for the little lady. Quick, now, don’t delay!  She needs them!” And maybe, you know, it could happen; he could treat me.

——————————————————————————————————

P.S The doctor who is helping me, knows about me because I kept pushing to see someone.  He’s the one who strode into that candy store on a wave of good connections.  Somebody knew somebody who might be able to help.  He rode in like a gunslinger from the wild west, a justice rider. And I can’t help but think, if I had left the store, or tired of asking for help, I would be back where I was, making no progress and suffering my slow decline. But I didn’t stop asking.  I didn’t stop pestering.

Is there someone you need to ask about something?  Don’t give up, don’t settle.  Maybe you were supposed to read this today.  It is exhausting keeping up the fight.  But life is too beautiful not to try.

Help, I’m Falling Apart


…the glue that holds our parts together, isn’t holding me!

One of the all time favourite picture books in our house is Tedd Arnold’s “Help I’m Falling Apart”.   It’s a funny little story about a boy who notices strange things happening to his body.  He is horrified! When his parents finally cotton on to what is causing all the distress, they sit him down and explain what bodies do.  His dismay turns into relief.  He is normal.

 

Tedd Arnold Penguin Books 2000
Tedd Arnold
Penguin Books
2000

I so wish the shenanigans my body has been up to were normal. I’ve been trying for a long time to have someone help me identify the cause of my Dysautonomia so I can treat it, and if we don’t find one, accept it.  I feel like we are closer to an answer than we have ever been. As you know, I can’t rest while there are still possibilities that might explain and inform. Something that might improve our lives!  I say ‘our’ because when I am well, my whole family will have a better life. Whatever works for me works for the good of all of us. I want to be ‘normal’ again, that’s all.  I’ve been looking for someone who can explain why my body does all these abnormal things.

You might remember that earlier this year I convinced my General Physician to refer me to an immunologist.  I really wanted to have a conversation with someone who had a passionate interest in auto-immunity.  I have always wanted to believe my problems are autoimmune in nature because then there is a treatment pathway.  I guess it is only natural that I want something that can be treated.  That’s human, right?  If I don’t have an auto-immune aetiology and that has been proven, then I can accept that and carry on with other investigations.  If all of them prove fruitless at least I will know that I didn’t leave a single stone unturned.

Today was the day of that appointment.  The immunologist, Dr Ameratunga was outstanding.  He got stuck straight into my medical history, listened carefully to my answers, took my assorted bits of paper with a promise to do more research.  And then he asked me if i would mind seeing another immunologist tomorrow who works out of his private practice.  The guy he wants me to see is a neuro-immunologist.  And just like that I am booked in to see him.  The neuro-immunologist has already seen my case and consulted on it from Wellington.  He works in Auckland one day a week. I am looking forward to meeting him in person so I can discover if there is anything further he can add.

And, I still have my little seedling of channelopathy hope perched on the windowsill of my mind.   How strange that after two years of languishing with no proactive assistance on all the other fronts, it looks like I am getting help with the other avenues of possibility too.  Lots of positive movement going on right now.  My head is hopeful. I wish it could translate some happy juju to my body.  Sometimes, even one appointment away from home can be too much for me.  Today, I can barely swallow my mouth is so dry.  I am typing with my eyes shut because my pupils are doing weird things. It is disturbing having my eyes open. Once, during a childhood argument my brother called me “A POO WITH EYES IN IT” (best insult ever).  And that is exactly how I feel.  Like a large lump of amorphous refuse. Blinking at the assault of light on my eyes, horrified by the discovery that I am in fact, a poo.

Before I left his consulting room, Dr Ameratunga said “we need to solve this”.  And I cried.  No tears though, they don’t seem to be working today.  Just that chin tremor moment.  I hope he didn’t see. It’s a big rollercoaster ride and finding caring doctors is pleasantly overwhelming. By the time the hubster and I were back in the parking lot, I wasn’t the only one with a tremoring chin.  “What a good morning!” he said, incredulous.  I smiled through my fog. I so sometimes wish I could choose when to have energy and vitality and enthusiasm.  If I could, I would have chosen that moment.  Because that’s all good stuff, right?  I’m making progress on a few fronts.

I just feel too exhausted to celebrate.