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!

24 thoughts on “Uncharted Territory”

  1. Doing a little happy dance for you, Rach. Such fantastic news!I am keeping everything crossed that this is but the first step on an amazing journey for you. Wish you could see my smile through the computer after reading your news. xx

    1. I can feeeel it, Michelle! We really hope that it is the first step too. I only wish I could bring every patient I know with me. I feel so emotional about the amount of suffering going on everywhere. It is heart breaking. I wish you beautiful skies tonight Michelle. X

      1. That burden isn’t yours, Rach. We all walk our own journey and in sharing yours you are already giving hope and that is incredibly powerful for many. You are entitled to rejoice in your success without worrying about the rest of us for once. Just concentrate on you and enjoying every morsel of this long overdue goodness. xx

  2. Woo Hoo!!! That is such fantastic news Rachel, I mean it’s huge. I am so happy right now after reading your post. It’s only been a short while, so to have so many positive changes and proof that such of your symptoms aren’t due to permanent damage. Wow,the future is looking bright.
    Emily xx 🙂

  3. Fantastic news, Rach. Almost more than we dared hope for. Long may the improvement continue and the treatment options open up. How exciting even to whisper the words “restoration of functions you thought were permanently damaged” YAYYYYYY!!!!!

  4. Holy Health Batman!

    Waaaahhhhoooooo! You go girl! How cool are you!

    I AM SO HAPPY FOR YOU! I’m so happy I even text Darryl before I wrote this comment. Lol.

    Your hard work, perseverance and utter tenacity has paid off!

    Will you get your own horse now? 😉

  5. You should give yourself permission to enjoy this young lady!!! Its brilliant. Have been watching your ups and downs over Christmas with much anticipation towards this. Your tenacity is a huge part of how you got to this point Rach. Huge ups. X

  6. It feels like you have been set free doesn’t it… like an impossible cloud has lifted and you can breath and see more opportunities….For me it was like feeling everything amplified… like the light of the day seemed clearer, brighter, I felt like I could smell the fragrance of flowers after the rain….its like being set free. I am “thrilled” to know you have had a good response to the meds. Wishing you all the very best with this new journey ahead. xxx

    1. Yes! It does! And then I get knocked down on my backside again, for just long enough to remember that this freedom is not something I can take for granted. I helped the hubster build foundations for a shed this morning and reached my terminal velocity… I’ve been in bed since we got home. But SO amazing to be moving around outside, no cane; being USEFUL! Well, I thought I was useful, I’m not sure if he would agree!

  7. Rachel I am so happy for you I could cry! Look at you. Full of hope and happiness. It’s a beautiful thing. Steroids can save lives. My son could well have died without them. Much love to you lovely lady. xx

    1. Thanks Deb! We are very hopeful. Today in the car we even spoke of future dreams, like eventually retiring together and being able to do things together!

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