Dr. Salim Hayek and the resident both, were so personable, concise, and listened to my mom and I so well. They asked great questions and for the first time, maybe ever, a doctor didn't look at me like I was an alien. So validating after 5 years of getting passed around from doctor to doctor! We established that unless there's another condition we don't know about this is definitely CRPS, as I have all the signs and symptoms.
The resident spent a long time with my mom and I getting a good thorough history and listening to all of the things I've gone through the last couple of years. He would laugh in disbelief that doctors said and did some things because they are so ridiculous that anyone with common sense could see that.
I can continue my oral ketamine (which has been key to me functioning for the last 4 years), my ketamine infusions should I need them, and I have a referral and appointment already set up for April 12th, 2017 with neuroimmunology at Cleveland Clinic downtown for an IVIG consult. Dr. Hayek seemed to think that Dr. Preston wouldn't have any reservations about trying IVIG again. Hallelujah! That's huge for figuring out my foot/ankle/leg spasms and getting me walking again.
We are also trying low dose naltrexone (LDN), as I haven't tried it before and the risks/potential side effects are quite small compared to some of the other things I've tried. Could take 5-6 weeks to see results, but I'm open to giving it a shot. To affect the immune system and start to modify it, it could take as long as 6 months to start having an effect. So far, the only side effect I've noticed is a slightly curbed appetite. No big deal there!
We discussed third and fourth line options which include a baclofen/prialt trial and potentially pump if it's successful. They trial it first via a single shot into the intrathecal space in the spine and if there's an effect, they put a pump in. Baclofen is a muscle relaxer that I was on orally for a while and it didn't do much for me at the FDA approved maximum dose. It was trialed last March and while I didn't notice an effect, my pain management doctor then though he did. Prialt is a newer drug. It is essentially snail venom, but it's shown to have excellent results in patients with intractable pain. Unfortunately, the list of side effects is long and serious, so it is definitely not an oath I'm ready to go down just yet.
As a very, very last resort, a spinal cord stimulator (risky for me in particular with my Cochlear implants and I wouldn't be allowed to ski or do taekwondo again) was discussed. Again, something I don't even consider an option at this point, if ever.
He strongly believes that my CRPS is immune mediated (something UPMC doctors refused to entertain as a possibility), and that we should explore that avenue first, as it is likely the cause of the muscle problems.
This was world class medicine from the minute we walked in the door to University Hospital today to the minute we were sitting at dinner and the neuroimmunologist's office at Cleveland Clinic called to schedule an appointment at like 7pm. I wish we had been referred to this doctor years ago!
For the first time in years, I feel like there is a plan and while management options for the CRPS are quite limited at this point, treating potential autoimmune things could help immensely. Now, it's just a matter of (im)patiently waiting for the April 12th appointment!
In the meantime, I have an appointment with a neurologist at UPMC Shadyside on March 7, 2017 and we are looking to into to see the chief of neuroimmunology at UPMC Presbyterian who is currently booking into February 2019.
It's been a tiring journey, but we are staying hopeful that someone somewhere will have a name and a treatment for this mystery condition we have come to know as "Otto".
I am a 20 year old junior at the college of my dreams. I am studying Emergency Medicine and Communication Rhetoric and minoring in the Administration of Justice and National Preparedness and Emergency Management certificate. At some point, I want to go and get my paramedic certification when my health allows. I have several chronic illnesses and this blog and website serves as a place for me to share my journey fighting CRPS and my other conditions. I hope that this blog can also serve as an outlet for raising awareness for rare diseases. Thanks for reading and I hope you enjoy! Feel free to comment; I'd love to know what you think!