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.

Fingers crossed!

https://clinicaltrials.gov/ct2/show/NCT00273364?term=multiple+sclerosis+chicago&rank=39

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.

Never in a million years did I think I would be creating a blog.

It also never occurred to me that I would have something to say that was “blogworthy” if that’s a thing.

Starting this HSCT journey with the hopes of curing my MS has made me realize that this is an experience that should be recorded and shared.

HSCT stands for Hematopoietic stem cell transplantation.  “HSCT is the type of stem cell therapy in which a patient’s existing immune system is completely eradicated through the use of powerful chemotherapy drugs and is then rebooted via an infusion of their own stem cells. Some of the results reported have been nothing short of astounding, and even previously skeptical neurologists are now being forced to consider HSCT as a potential game changer that may significantly impact the MS treatment landscape sometime in the not-too-distant future.” (http://www.wheelchairkamikaze.com/2015/06/recent-research-on-hsct-stem-cell.html)

Reading the blogs of the others in Dr. Burt’s study has inspired me.  The more stories I read of others who are experiencing, what I hope to experience, this miracle of HSCT, the more comfortable with the process I become.  Even the parts that look painful, or scary, or just awful.  They’re all parts of the story.

Like all stories, mine has a beginning.

So here it is:

In 2003 I was diagnosed with Multiple Sclerosis (MS).

I had been sick for several years but it didn’t have a name that stuck- I think it started with mono in my early 20’s and I just never got better.  My other theory is that maybe the Norplant birth control thing I had implanted in my arm just messed me up somehow.  I had it removed after a couple years due to the weight gain and not feeling well.  At the time it seemed like a great idea….I was a month shy of 18 when my son was born in 1992 and when the doctor suggested it I thought it was a great idea.  It’s since been taken off the market and I still wonder if it didn’t trigger something.

I was always exhausted.  My doctor sent me to an endocrinologist….”it’s hypoglycemia” he says.  “Read the book Sugar Babies.”  Then when I complained about the pain in my arms he sent me to a rheumatologist…..”it’s fibromyalgia” he says…..”I have it too.”   You know how they test you?  They poke you in some trigger points and if it hurts then you have it.  I decided to change doctors.  The new doctor thinks it’s subclinical hyothyroidism.  Nobody knows for sure what it is and I’m busy raising a little boy by myself so I just walk it off.

In 2002 I began working at a Supportive Living community in Chicago.  I met one my now best friends Marilyn, a nurse, who I worked with closely converting an independent living community into a supportive living facility model.  She remembers me telling her about falls that occurred when I went away to weekend retreats with the youth groups I led at my synagogue.  I don’t remember falling but I must have had a fall or two if she remembers me telling her.  The defining moments that I remember are when I would be walking down the hall with Marilyn and push her into the handrails on the wall and she’d exclaim “why are you walking me into the wall?”  And I would tell her “I don’t know I’m just clumsy lately.”  She knew that all too well.  We would walk across the street to Burger King for a break and get our King size Diet Cokes.  Mine would slip, right out of my hand, because i couldn’t feel it….and it would splash all over the floor and make a mess.  To this day she won’t let me carry any beverages.  One day after I pushed her into the wall while on our walk, she asked “do you have numbness and tingling in your extremities?”  I told her “no, why?” She said “don’t worry about it if you don’t have it.”  Of course I pushed her for more information and she said those were MS symptoms.  But I didn’t worry about it, because I didn’t have those symptoms.  Until two weeks later.

Early 2003 I woke up and couldn’t feel my feet.  I called my nurse friend Marilyn and told her “you know how you were asking if I had any numbness or tingling?  I do now.”  She told me to go to a neurologist and get a diagnosis.  I found one in my insurance plan.  I remember very little about her- I just remember being 28 years old being in an exam room with her and my parents and her telling them I have Multiple Sclerosis and that she found 3 lesions on my brain.  I guess she had ordered the MRI before I even met her?  I don’t even recall.  My mom remembers the doctor saying I could quit working on go on disability.  I don’t remember that either.  I remember my dad buying every book he could find about MS and he passed them out to the family and told us to read them and trade with each other so we could all learn about this disease.  The only thing I remember reading in one of the books was “it’s okay to be in denial, as long as you take your pills and do what you need to do.”  So that’s all I needed to read.  I sold the books on Amazon.  Dad found Dr. Stefoski at Rush in Chicago.  It wasn’t far from my job and he had an excellent reputation- “the best” as my dad was told.  When he looked at my MRI he said “that neurologist only saw 3 lesions?” and he started pointing and counting “1, 2, 3, 4, 5,6, 7, 8….” and I told him to stop counting.  I didn’t want to know.  I started on Avonex.  Marilyn injected me on Fridays at work so I could recover on the weekends from side effects (until I learned that Aleve before and after fixed the flu symptoms) and then when I changed jobs I had other wonderful nurses who would “stick me.”  I never felt “well” I just felt varying degrees of crappy.  Which may not be a feeling but it should be.  Over the first several years there were a couple times I didn’t feel well and there would be new lesion but he felt Avonex was ok.  Until this year.

In May of 2015 I noticed my lip was numb.  I remember telling one of my mangers that it felt weird.  Then it spread to the left side of my entire face.  I got an MRI and my neurologist told me he was admitting me to hospital for a few days for IV steroids.  I refused.  I told him I was covering multiple departments and working out my notice period with my job and it was bad timing and that was impossible and to just give me pills.  We argued, I’m stubborn, so he prescribed 100mg of predisone a day for 2 weeks.  But it didn’t work.  i kept getting worse.  I couldn’t drive to work- my mangers took turns picking me up and dropping me off.  Then I was walking arm in arm with them into the building and holding onto the hallway rails designed for our elderly residents….and the staff who were crying because I was quitting were now crying because I was a mess.  So I agreed to go inpatient.

In June I spent a week in the hospital getting IV steroids.  Dr. Stefoski came to see me and told me Avonex was no longer working for me.  I had just seen him in March and everything was fine.  He said I should leave the hospital with very few symptoms.  Unfortunately that wasn’t true.  I still couldn’t drive.  I could barely function.  I had a week off inbetween the hospital and my new job.  It wasn’t enough.  I ended up resigning from my job after only 3 1/2 months in October.  It was too far away and the time lost in my car with the energy I had already lost was just not a combination I could live with.  I decided to take the rest of the year off and focus on my health and live off of my savings and take some online classes.

In October i decided to look at the clinical trials website to see if Northwestern still was doing a study.  A friend had told me about the Northwestern study for stem cell transplants 10 years ago but my son was young and I didn’t think he could deal with me going through chemotherapy and it just wasn’t possible.  Well sure enough I found the clinical trial and it’s now in phase 3 and i decide “this is it!”