This week has been awful.
Sunday I cut off a part of my thumb while using a mandolin cutting potatoes- and apparently, myself too. Thankfully it will grow back but it’s pretty traumatic and gross.
Monday I called Northwestern to follow up on my appointment with Dr. Balabanov. Kim said she was just asking Dr. Burt about me and that he had said he was going to talk to my neuro, Stefoski. I told her I had a feeling he already had as I was getting a weird vibe from his nurse.
Dr. Burt called me to inform me that Dr. Stefoski is a very good doctor but tends to be conservative and will not agree with the study and he will not come between me and my doctor so he has to put me on hold. I was devastated. I asked him if I convince Stefoski can I come back then and he said he can’t be involved and I told him I understand. Of course, just my luck, that out of the 3 neurologists in that practice at Rush mine is the one who won’t agree with HSCT. I called Rush and for a call directly with Stefoski to call me back.
I immediately went to the HSCT Facebook pages and posted an SOS that I was in need of a neurologist in Chicago who is not affiliated with Rush or Northwestern. I got several responses that Dr. Katsamakis is the one. I left a message for his new patient registration people at his practice. I also called another neurologist affiliated with UIC who my aunt connected me with and got an appointment with him for March. I figured all specialists are going to have long waiting lists so I’m going to just have to convince Stefoski.
Tuesday, yesterday, I brought my MRI disk to Stefoski’s office and gave it to the receptionist to give to him. I told her I hadn’t heard back from Stefoski and that I needed to talk to him for just a few minutes and needed an appointment or at least a phone one. She said he was busy and would have him call me. I then asked her if I could talk to his nurse and she said she may be with a patient and I told her I could wait. I had a seat in the waiting room which was pretty full. I overheard a couple behind me talking about Dr. Burt’s study so I turned around and told them I apologized for interrupting but I overheard them talking about the study and they told me it was for their daughter. I asked if she sees one of the neurologists there and they said no. I explained I was there because of the study and my doctor refusing to agree for me to participate and their daughter said “oh you’re the one from the facebook page I gave you my doctor’s info!” I went and sat next to her and we started talking and I was very happy to hear she was there for her evaluation with the consulting neurologist, and my neurologist’s partner, Dr Balabanov. Then my doctor’s nurse Haley came out and got me so I said goodbye to Courtney and explained to Haley we all know each other from the study facebook page. I told her I brought the CD of the MRIs so Stefoski could measure them and decide how to treat the lesions but really I also wanted to beg him to reconsider. She said she could try to talk to him but his mind was made up. I reminded her that when we talked initially and I asked her about how he would feel about it that she said “I’m sure he’ll be fine with it since his partner is involved.” She said she knows but he thinks tecfidera is more effective for me at this point. I asked her if he has agreed for other patients for HSCT and she said no that he doesn’t agree with it now but used to in the beginning. So I don’t know what happened but it sounded like I really didn’t have a chance with Stefoski. I again voiced my concerns about tec with the JC+ virus and again she said I was confused that it’s Tyfabri and again I told her I looked it up and it is both. She said she’s have him call me.
I received a call yesterday from Stefoski that he understands I’m upset. I told him I really want him to support my decision for the HSCT study and he said “I will not agree to drop a nuclear bomb on your MS.” Well that is exactly what I want…..a fucking nuclear bomb dropped on my MS! That’s the point! He said tecfidera should be fine for me and that the study doesn’t want people like me, they want them worse off, and I told him that is untrue I meet criteria they specifically want people like me. I asked him if he agreed to the study for anyone else and he said that he has and that he was involved in the study. Honestly, I believe his nurse. Maybe he was interested in the beginning but clearly he is not now and yes he has 40 years of treating MS and he seems happy to do it conservatively. I told him respectfully it’s been over 12 years with him but i am going to get a second opinion. He did agree that if I’m staying in his practice that he will allow he to try Gilenya instead of tec. I agreed to try that.
I was still devastated….but….then I got a call from Dr. Katsamakis’ office with registration and got an appointment for January 4th! That’s less than a month away. I can wait. Doing my best to keep the faith that everything happens the way it’s supposed to for a reason. I feel good about my chances with him.
Meanwhile, I’ll have my thorasic spine MRI tomorrow and get my blood work released to me so I’ll be walking in with lots of info for my appointment next month.