"If you every find yourself in the middle of the dark and you can't see, I'll be the light to guide you."
Update on this morning's neuroimmunology appointment at University Hospital Main Medical Center. It went very well. 25th neurologist is the charm I suppose! The doctor and resident both were fantastic, listened carefully, asked great questions, and spent a good deal of time with us. He also concurred that I have an rare undetermined variant, likely related to the SPS. We know that "Otto" is neurological and autoimmune in nature.
He said he's never seen a pediatric onset case of SPS, nor a case a crazy as mine. Go figure. He was looking at the antibody levels in complete disbelief. I think he was expecting like a false positive, or any ever so slight elevation. He said it isn't a classic case, focal stiff limb, jerking limb, and my CT scan is not consistent with PERM, as I've only had encephalopathy once due to a physician error. That about covers the known variants of SPS.
My Key Points in my Case
-No half decent fit into a variant
-GAD65 and 14 other paraneoplastic antibodies (without detectable cancer) in the blood AND CSF
-No response to oral medications/benzos, but respond to IV diazepam
-No other conditions to explain the GAD and the other antibodies other than SPS or a form of cancer
Pretty humbling hearing that from someone who has treated several patients across the spectrum. I hope someone writes a case report on me to help other undiagnosed patients and the physicians treating them.
Regardless, the treatment is the same. I'm still digesting it and my parents and I have a lot of things to consider in coming weeks.
First line treatment is muscle relaxers and high dose benzos (which I failed), high dose steroids (also failed), PT (not possible with my feet contracted at the moment), IVIG (second line treatment) which worked for a while and then stopped, plasmapheresis (also a second line treatment), rituxmab (an immunosuppressant that destroyed the "factories" where the bad antibodies are made, would be third line, chemo agent would be fourth line wipe out my immune system.
The UH Cleveland neurologist I saw today and the NJ neurologist from a few weeks ago each agreed to work with a Pittsburgh neurologist to actually do the treatments, in a large part because of insurance constraints. I have two amazing neurologists and I really hope that the local neuro is willing to work with them!
Here's the limbo part. I need bilateral Vortex ports to do plasmapheresis. However, after my scary reaction to the trauma to my body was plain dangerous and I couldn't get someone to help for 14-16 hours. But, plasmapheresis works arguably 6 times faster than IV with no side effects.
Because IVIG wore off, some my neurologists are not overwhelmingly positive to work again, or so they say.
They both have their pros and cons. I'm personally not a fan of having to wait at least an additional 6 months in the wheelchair. I'm tired of all of this and I just want to move on with my life and flat feet.
I know what I want, but if my parents aren't on board, I can't go against my parents especially because they are insuring me. Therefore, I'm torn, frustrated, and wondering why UPMC neurologists are incapable of staying in communication with their patients. I do not trust this UPMC neurologist as much as I really need to, but what are my options? I need treatment, in state, in network to get it covered.
That's enough from me for now. I wish I knew what I am up against, but I haven't found any other "unicorns" like me in case studies. According to the doctors, they don't exist.
I really do feel like I'm on an island by myself. No case reports similar to me, doctors guessing, and the lack of agreement regarding treatment for me within the family. I feel like I should get to make the decision after the doctors present the options to me, but I'm not. I guess no one will understand me and my logic, expect for someone like me.