Help say Peace Out to MS
Donation protected
This is my story:
I was diagnosed with Relapsing Remitting Multiple Sclerosis officially in 2016. My symptoms began in late 2014. I noticed numbness in my right lower leg and foot in October, it didn’t affect my walking, so I ignored it, thinking I pinched a nerve while rough housing with my son. When I went in for surgery in December 2014 (a subtotal hysterectomy-kept my ovaries) my leg was still numb and when I got home I noticed the numbness had crept all the way up my torso. Again I ignored it thinking it had to do with my surgery. In January 2015 I noticed my vision in my right eye wasn’t right, I went to see my ophthalmologist and she was unable to correct my vision to 20/20. She referred me to a Neuro-Opthalmologist for possible optic neuritis. Now I work in healthcare, and I knew a little bit about what it was, but did not know it was the #1 presenting symptom for MS. I started to panic. I went to see the Neuro-ophthalmologist, he wasn’t convinced it was optic neuritis because it wasn’t severe enough. He dismissed me with the thought that I had a “temporary loss of oxygen” to my eye during surgery and it would get better over time. No MRI was ordered. The rest of 2015 was more symptoms related to the “big scary” as I called it at the time. I had numbness of my left leg that extended up my torso. We were moving into our new house and I had scraped my back and bled through my shirt, I had no idea until my husband pointed it out. Later I had Bilateral 4th and 5th finger numbness with a wet sensation, it totally felt like I could literally fling water off my fingertips. I went all of 2015 knowing it was MS and just not wanting to face it. In February 2016, I finally decided to face it and saw my PCP. She ordered the MRI, and called me the same day with the results, along with an apology for the devastating news. She referred me to a neurologist. My first appointment was disappointing. They basically handed me a bunch of literature on various drugs and said come back in a month with a decision on which one you would like to take. What?! So I went home and I read them pretty much cover to cover and I was terrified. The side effects were daunting. I ultimately decided on Copaxone because it was the oldest with the least amount of side effects. Never mind the fact I would have to learn to inject myself three times a week. Although I’m a nurse, and have given hundreds of injections, I had never given myself one. I did learn and did ok on it for a year. After a year, for reasons no one could explain, I started having horrible reactions to it. I began having severe flu-like reactions with high fevers, severe joint/body pain, rigors so hard I would be sore the next day. I would wake up absolutely drenched in sweat once the fever broke. My fevers would be 104! Then I started getting hives. At first my neurologist thought it was a “bad batch” of medicine. It was reported to the drug company and new medicine was sent. The next few injections were fine, then back to having bad reactions. My neurologist then thought I had developed an allergy and sent me to an allergist to determine if I was indeed allergic to it. Through his testing he determined I was not allergic. I continued on the Copaxone but premedicated with Benadryl and Motrin, this lessened the reactions, but did not stop it completely. In October 2018, my vision in my Left eye was noticeably worse. I had seen my ophthalmologist in May and had no change to my prescription. I now could not read road signs. Again, optic neuritis was the determination, I was offered steroids but declined, after all the last time I had it it did get better on its own over several months . I called my neurologist, had an MRI and found a new lesion. Now it was time to change drugs. As much as I hated those shots, knowing the effects had a comfort to them. Now they recommended Tecfidera. I started Tecfidera in November 2018. Wow the stomach pain was NOT fun! Try looking 6mo pregnant and being so nauseous you can’t move! Luckily it only lasted for 4 weeks. During this journey so far, I have seen myself slow down, become forgetful, my balance is terrible, my bladder seems to belong to a 90yo. I look at these pills I take twice a day, that lower my immune system and allow me to catch every cold I encounter, and I wonder why. Why isn’t there something better than this? Why are drug companies only slowing down the progression? Why hasn’t anyone figured out how to STOP it? That’s when I began looking into other alternatives.
In March of 2019 I began researching HSCT, after reading about it on another FB page. I joined several FB HSCT pages and read the stories of others who had gone on the journey. I read the studies published in medical journals. I watched videos of doctors talking about the treatment. I was in disbelief, how had I not learned of this sooner? I found the information to apply to Dr. Burt’s clinical trial and emailed them. Surprisingly I heard back the next day asking for more information about myself. I gathered all the requested info and sent it in. She said it could be up to 2 weeks to hear from Dr. Burt if he thought I could be a candidate. It was 2 days! I was invited to go to Chicago for formal evaluation. May 21 and 22nd. I saw Dr. Balabanov first, he didn’t seem overly impressed until I mentioned my T spine lesions, and that my neurologist encouraged me to seek HSCT. He couldn’t say whether I was a candidate yet due to my MRI being scheduled after the appointment (not sure why they would schedule it that way then). I had my MRI after the appointment and waited until the next day at 3:30 to see Dr. Burt. Dr. Burt didn’t seem particularly interested in my case. He said I hadn’t failed Tecfidera yet and would be an immediate candidate when I did. I explained my last visit to my neurologist and her telling me that my t-spine lesions meant I had a more aggressive disease and that she encouraged me to seek HSCT. That started the change in our conversation. He wanted me to I understand how serious the treatment/transplant is. I had already researched and knew what the effects were and I know the risks. I also know the risks of staying on medications that only slow the progression. I wanted a chance to shut it down for good. Let my body heal itself if possible.I left his office with a “maybe”, he needed to talk it over with Dr. Balabanov and decide. His nurse told me i would hear sometime the next day. I left Chicago not knowing whether I would be given this precious opportunity.
The next day, a little after noon, I received a call Dr. Burt’s nurse that I had been accepted off-study. The next step is insurance authorization which can take some time. I want to say Peace Out to MS.
7/30/19: My insurance denied my HSCT x3 at Northwestern calling it a “non-standard of care” “not medically necessary” and “experimental”. Dr. Burt has now closed my case there and is wrapping up his entire program to write a text book and go to other universities to teach the procedure.
7/31/19: I have the opportunity to now have HSCT here locally in Cincinnati, however it comes with a price. $70,000. So, it’s time to start fundraising.....
I was diagnosed with Relapsing Remitting Multiple Sclerosis officially in 2016. My symptoms began in late 2014. I noticed numbness in my right lower leg and foot in October, it didn’t affect my walking, so I ignored it, thinking I pinched a nerve while rough housing with my son. When I went in for surgery in December 2014 (a subtotal hysterectomy-kept my ovaries) my leg was still numb and when I got home I noticed the numbness had crept all the way up my torso. Again I ignored it thinking it had to do with my surgery. In January 2015 I noticed my vision in my right eye wasn’t right, I went to see my ophthalmologist and she was unable to correct my vision to 20/20. She referred me to a Neuro-Opthalmologist for possible optic neuritis. Now I work in healthcare, and I knew a little bit about what it was, but did not know it was the #1 presenting symptom for MS. I started to panic. I went to see the Neuro-ophthalmologist, he wasn’t convinced it was optic neuritis because it wasn’t severe enough. He dismissed me with the thought that I had a “temporary loss of oxygen” to my eye during surgery and it would get better over time. No MRI was ordered. The rest of 2015 was more symptoms related to the “big scary” as I called it at the time. I had numbness of my left leg that extended up my torso. We were moving into our new house and I had scraped my back and bled through my shirt, I had no idea until my husband pointed it out. Later I had Bilateral 4th and 5th finger numbness with a wet sensation, it totally felt like I could literally fling water off my fingertips. I went all of 2015 knowing it was MS and just not wanting to face it. In February 2016, I finally decided to face it and saw my PCP. She ordered the MRI, and called me the same day with the results, along with an apology for the devastating news. She referred me to a neurologist. My first appointment was disappointing. They basically handed me a bunch of literature on various drugs and said come back in a month with a decision on which one you would like to take. What?! So I went home and I read them pretty much cover to cover and I was terrified. The side effects were daunting. I ultimately decided on Copaxone because it was the oldest with the least amount of side effects. Never mind the fact I would have to learn to inject myself three times a week. Although I’m a nurse, and have given hundreds of injections, I had never given myself one. I did learn and did ok on it for a year. After a year, for reasons no one could explain, I started having horrible reactions to it. I began having severe flu-like reactions with high fevers, severe joint/body pain, rigors so hard I would be sore the next day. I would wake up absolutely drenched in sweat once the fever broke. My fevers would be 104! Then I started getting hives. At first my neurologist thought it was a “bad batch” of medicine. It was reported to the drug company and new medicine was sent. The next few injections were fine, then back to having bad reactions. My neurologist then thought I had developed an allergy and sent me to an allergist to determine if I was indeed allergic to it. Through his testing he determined I was not allergic. I continued on the Copaxone but premedicated with Benadryl and Motrin, this lessened the reactions, but did not stop it completely. In October 2018, my vision in my Left eye was noticeably worse. I had seen my ophthalmologist in May and had no change to my prescription. I now could not read road signs. Again, optic neuritis was the determination, I was offered steroids but declined, after all the last time I had it it did get better on its own over several months . I called my neurologist, had an MRI and found a new lesion. Now it was time to change drugs. As much as I hated those shots, knowing the effects had a comfort to them. Now they recommended Tecfidera. I started Tecfidera in November 2018. Wow the stomach pain was NOT fun! Try looking 6mo pregnant and being so nauseous you can’t move! Luckily it only lasted for 4 weeks. During this journey so far, I have seen myself slow down, become forgetful, my balance is terrible, my bladder seems to belong to a 90yo. I look at these pills I take twice a day, that lower my immune system and allow me to catch every cold I encounter, and I wonder why. Why isn’t there something better than this? Why are drug companies only slowing down the progression? Why hasn’t anyone figured out how to STOP it? That’s when I began looking into other alternatives.
In March of 2019 I began researching HSCT, after reading about it on another FB page. I joined several FB HSCT pages and read the stories of others who had gone on the journey. I read the studies published in medical journals. I watched videos of doctors talking about the treatment. I was in disbelief, how had I not learned of this sooner? I found the information to apply to Dr. Burt’s clinical trial and emailed them. Surprisingly I heard back the next day asking for more information about myself. I gathered all the requested info and sent it in. She said it could be up to 2 weeks to hear from Dr. Burt if he thought I could be a candidate. It was 2 days! I was invited to go to Chicago for formal evaluation. May 21 and 22nd. I saw Dr. Balabanov first, he didn’t seem overly impressed until I mentioned my T spine lesions, and that my neurologist encouraged me to seek HSCT. He couldn’t say whether I was a candidate yet due to my MRI being scheduled after the appointment (not sure why they would schedule it that way then). I had my MRI after the appointment and waited until the next day at 3:30 to see Dr. Burt. Dr. Burt didn’t seem particularly interested in my case. He said I hadn’t failed Tecfidera yet and would be an immediate candidate when I did. I explained my last visit to my neurologist and her telling me that my t-spine lesions meant I had a more aggressive disease and that she encouraged me to seek HSCT. That started the change in our conversation. He wanted me to I understand how serious the treatment/transplant is. I had already researched and knew what the effects were and I know the risks. I also know the risks of staying on medications that only slow the progression. I wanted a chance to shut it down for good. Let my body heal itself if possible.I left his office with a “maybe”, he needed to talk it over with Dr. Balabanov and decide. His nurse told me i would hear sometime the next day. I left Chicago not knowing whether I would be given this precious opportunity.
The next day, a little after noon, I received a call Dr. Burt’s nurse that I had been accepted off-study. The next step is insurance authorization which can take some time. I want to say Peace Out to MS.
7/30/19: My insurance denied my HSCT x3 at Northwestern calling it a “non-standard of care” “not medically necessary” and “experimental”. Dr. Burt has now closed my case there and is wrapping up his entire program to write a text book and go to other universities to teach the procedure.
7/31/19: I have the opportunity to now have HSCT here locally in Cincinnati, however it comes with a price. $70,000. So, it’s time to start fundraising.....
Organizer
Kimberly French
Organizer
Bethel, OH
