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.
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!