The application process is a bit of a rollercoaster. It seems that some have long waiting periods between steps and some go relatively quickly. I feel lucky that my process moved along at a nice pace. The Thanksgiving holiday slowed things down a bit recently but I’m sure things will catch up.
October 29th I called Northwestern Feinberg center and told the receptionist that I meet the criteria and gave her my email and info.
October 30th I received the email from nurse Kim, the clinical research nurse, with lots of information and some screening forms to complete. I immediately filled them out and sent them back the same day.
November 4th Elizabeth, “Betsy,” emailed me intake forms which I didn’t receive until she forwarded them again on November 9th. I immediately turned those back around with my MRIs from May of this year and my previous from 2012.
I started looking at everything I could find about HSCT and posted a question about it to one of the MS Facebook pages where I was introduced to a couple of HSCT MS pages specifically for patients in Dr. Burt’s study! Since then I’ve been hooked….following everyone’s progress as they got their dates for evaluation, found out if they were accepted, etc. It’s an amazing community of people and I’m grateful to be among them. People post information about insurance plans that cover, which hotels to stay at when they’re here, lots of great helpful info. People come from all over the world. I’m luck to be a little over 2 miles from Northwestern. I saw on the page that my insurance, Cigna, covers HSCT and I commented on FB that I was shocked by that and one of the moderators said it was one of the best she has seen yet, they covered someone to come here to Chicago from out of state, paid for the hotel, the caregiver before and after the procedure, the whole 9 yards. So I’m thinking…..this is fate. I was meant to leave my old job in Chicago so that I could get this Cigna Gold plan with the other job that I only stayed at for a short time (insurance was free for administrators with that company so naturally I took the best plan) so I’m continuing to pay $800/month COBRA for it. It will be worth every penny if it gets me this cure.
Since this is a randomized study it’s not 100% certain that I’ll receive the HSCT. If accepted to the study there is a 50% chance that I can be randomized to the control group and be on a traditional FDA approved disease modifying drug (DMD). However, if I do decline, which likely I will, I can then be moved over the the stem cell arm of the study.
November 17th I got my MRI and evaluation dates! It look a little while because my COBRA started Nov 1st and it took a bit for them to apply my payment and notify the insurance company etc and for northwestern to verify benefits. My evaluation dates changed a couple times and the times changed a couple times.
My symptoms started getting worse. I was nauseous and more dizzy than usual and then started throwing up and started having bladder issues with frequency and urgency so I thought I had a UTI and requested for my neurologist to call in an antibiotic. Then I started losing bladder control and it was humiliating and uncomfortable and I had to buy pads and incontinence products like I used to buy for the seniors I took care of! On a Friday night I started having involuntary contractions going on down there like involuntary kegels and I couldn’t sleep and was miserable and searching the web for a fix when I read about muscle relaxers and remembered I take baclofen for spasticity so I popped a couple of those and it stopped so I could sleep. That Monday I called my neurologist’s nurse, Haley, and she said my doctor was out of the country but that his associate, Dr. Balabanov, who happens to be the consulting neurologist for the study, didn’t think it was MS but rather an UTI. He ordered a Thorasic MRI still though and I’m scheduled for that Dec 11th. He also ordered Detrol which seems to be helping. I’m convinced this is neurological. i don’t think it’s a coincidence that i’m having symptoms of weird electrical zaps here and there and numbness and that weird contracting thing.
November 23rd I went for the MRI- they did brain and C-spine with and without contrast. Thankfully I was able to drive that day.
November 25th, afternoon before Thanksgiving, I went for my evaluation with Dr. Burt. My friend Denise came with me for support to help be my brain. I met a new friend from the Facebook MS HSCT Dr. Burt page and she was scheduled for her evaluation at around the same time as me. We met in the waiting room and it’s been great to have someone to talk to about this process as we go through this together.
The nurse took my vitals and I told her there is no way I’m 5’7, I’ve been 5’8 since like 8th grade but she insists it’s correct. It turns out I lost an inch which becomes clear later with my MRIs.
Dr. Burt came in and started asking questions immediately asking when I was diagnosed, what symptoms did I have, what medication did I take (Avonex 13 years), for how long, when did I stop, why did i not stay on the next treatment (Aubagio- could’t deal with the nausea only 2 months, the hair loss I didn’t care about I have a ton of Jewish/Italian girl hair) how long was I on it , when did I have my last relapse, how many have I had (May of this year and I believe I am now) and he told me that my MRI shows active lesions and my neurologist will likely prescribe steroids because he would. He asked who my neurologist is, I told him Stefoski, he asked if he told me about the study and I told him no, and he said so you’re here on your own and I told him yes. I think it’s weird that my neurologist didn’t tell me about it when his partner is the consulting neurologist for the study so I need to ask him about why that is. Dr. Burt made me walk the line, which I hate, heel to toe no cheating, my arms flailing… and he was pressing on my stomach for some reason while I laid on the exam table and noticed his name on my shirt- I was wearing the HSCT Dr. Burt shirt someone on the facebook page started to raise funds for people without insurance coverage to cover the HSCT. He had never seen it before and I found out soon after that I received one of the first batches so it had only been out a week. I told him I’d order him one and he was pretty psyched about that.
He said “there’s two ways we can do this” either we do it off study (which is preferable!) or if it’s on study it’s 50/50 control arm/transplant. He picked up the phone and asked the nurse Kim to get me an appt with consulting neuro Dr. Balabanov at Rush for next week (now this week).
I’m still waiting for an appointment but it sounds like he’s quite busy with all the new folks being enrolled and applying to the study as well as a number that started their treatments this week. It’s exciting….I just can’t wait for my eval date so I will know what’s next.