Johns Hopkins Appt. Update 1/23/19- OFFICIAL DIAGNOSIS DAY!

So I went out to Johns Hopkins for a follow up appointment with the Stiff Person expert and it was a great appointment. We are making a few treatment plan changes that should have a big impact.

First of all, we decided to cut out my clonazepam completely. It isn’t helping me and has never helped me at higher doses.

Second, I am being switched off of IVIG to SCIG pending insurance approval. The SCIG infusions contain immunoglobulin (IG) just like the IVIG, but the IG is released into my subcutaneous tissue slowly reducing the risk of infusion and allergic reactions. Also, after a nurse trains me, I can administer the treatment myself in the comfort of my own home! Less time in infusion centers! Woohoo! While we wait for approval, I’ll be on plasmapheresis again for five sessions, which should bring my arm function very close to baseline, which would be amazing.

Pending blood test results, I will find out if I stay on Rituxan or go on Cellcept, an oral immunosuppressant. The results aren’t back, so at this time, no one has the answers yet. However, it seems I’m experiencing a negative impact to my liver from the Rituxan, a pretty rare side effect of the drug, so we are considering that as well in the decision.

We are hopefully being connected to a doctor that is at MUSC that I can follow with after the move and will take orders from Hopkins through the doctor’s connections.

Lastly, I was enrolled in the expert’s research study to find the biomarkers for Stiff Person patients, which means, we have proven beyond a reasonable doubt, that the final diagnosis is Stiff Person Syndrome. So while I’ve been treated for it for a while now, I’ve never been able to say when I was diagnosed. Well… symptoms started early September 2012 and my “official” diagnosis day in my eyes is January 23, 2019 and that’s what I’ll tell doctors when they ask “When were you diagnosed?”. A question I never truly had an answer for and usually left me stuttering or uncharacteristically silent with no clue what to say.

Am I glad I have it? No, I’d wish it away in a heartbeat. Am I glad that I have a true medical answer and it’s not “all in my head”, stress, conversion disorder, psychosomatic illness, functional neurological disorder, etc.? Heck yes! This is THE DAY I’ve been (im)patiently waiting for for almost 7 YEARS! I feel so incredibly validated after being told so many other things over the years. The feeling of relief that we are still trying new things and striving to make my quality of life the best it possibly can be makes me as content as can be, because I know my God has got this and can accomplish many things that other humans and I cannot. And hopefully by studying me and the handful of other pediatric onset SPS patients in the world, we can find out how to better treat us. I’m not 1 in a million, I’m even rarer than that because of the pediatric onset, so people like me all need to get involved with this study to find the “key” to the differences in pathophysiology between adult onset and pediatric onset SPS. The answer is out there, we just need to ask the right questions…

~Jeremiah 29:11~

3 thoughts on “Johns Hopkins Appt. Update 1/23/19- OFFICIAL DIAGNOSIS DAY!”

  1. Hello, I came across your story from the Liz blows website. Thank you for sharing. I have bee recently diagnosed by my primary and am being referred to Joh Hopkins. Ive been on a 13 year healing journey. They are still reviewing medical chart notes before scheduling me. If you have any advice, insights, preparation tips please send them my way. I pray your treatment plan is successful. I have a blog as well ( It helps me process everything. Love and prayers.


    1. Hi Amber!

      If Johns Hopkins accepts you as a patient, you will find that the neuroimmunologist, Dr. Scott Newsome, is absolutely amazing, he listens, and really thinks outside the box he is currently conducting research on about 100 patients’ blood samples to see if they have something in common on a genetic or epigenetic level. He has an impeccable bedside manner, he’s brilliant, and yet, so humble. He’s going as far as to get the FDA to approve an off-label medication for me to suppress my B and T cells without chemotherapy. I would narrow down your medical records so that you only have the test results, prescription information, and your pre-existing condition(s). My dad who is a doctor, wrote a cover letter covering my entire journey up to that point concisely. Because pediatric onset cases of Stiff Person Syndrome like mine are not as well documented, or are fatal in infancy (also known as Stiff Baby Syndrome). In general, I think he only takes cases that are most likelyto have SPS. My number one piece of ice for going down to Johns Hopkins to see Dr. Newsome is to only talk about the things that are relevant to your case and if you bring up other potentially related conditions I would caution against spending a lot of time on them.

      Email me at and I’d be happy to help you figure some of the
      craziness that is getting in with the world’s expert on SPS in the largest SPS outpatient treatment Facilities in the world. and coping with the illness. Also, if we email, I’m willing to share every single thing that has happened to me; medications I’ve been on, etc. SPS patient to patient (not to be taken as medical advice; alway check with your doctor(s) first. My email inbox is always open! I can tell you more without added risk from other viewers, who may not check with their teams first. Hugs and prayers to you as well. I’m here if you need me! I hope this somewhat helped. 🙂🖤 #ZebraStrong


    2. I LOVE 😍 your blog! I’m in the process of transferring my information over from my other blog that stopped allowing me to post (over 200+ posts to transfer). It’s a pain. 😂🙈 I subscribed to get email alerts when you post. I’d love if you’d follow my blog as I walk a very similar yet different journey with the same rare disease!


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