My name is Amy Peterson. In 1995, when I was 17 years old, I was diagnosed with RRMS (relapsing/remitting multiple sclerosis.) This startling news spurred me on to become the scrappy and occasionally hilarious woman I am today at 35.
The level of disability caused by MS is rated on a 1-10 scale called “EDSS”. On this scale “0” means no MS disability at all and “10” means dead. In 1995 I was an 8. I recovered to about a 3 and remained there with some days better than others for the next 15 years. In 2010, I began to notice a steady decline with no sign of an actual attack and started to wonder if perhaps the disease had turned into SPMS (secondary progressive multiple sclerosis.) Decline was confirmed by my neurologist, though an actual diagnosis of disease change was not made because I hightailed it to Moscow, Russia before the decline could continue.
I entered the hospital in Moscow in October 2012. By this time, I was a 5 on the EDSS scale and needed a cane to walk for long distances. Sadly, 100 meters was a long distance.
My bone marrow transplant (bone marrow taken from me prior to chemo – no donors) was complete on October 17, 2012 and I left the hospital on November 4, 2012, returning to the United States on November 13.
While still in Russia, I found that I had no need of the cane. After my release from the hospital, and before I left the country, I was able to do a good bit of touristy walking around like a regular person. I can’t have a passing thought about that time without a goofy grin spreading over my face.
I returned home and had no problems with my immune system recovery. I caught a tiny cold after two months and was over it in a week. Other than that it was smooth sailing.
After six months, I had an MRI which has shown zero disease activity. This means that I have no lesions on my brain which are currently doing any damage (I had four as of October 2012.) I do have some scars from previous damage, but they are shockingly minimal (this is by the grace of God, as HSCT does not repair nerve damage.)
I began physical therapy and can now consistently walk for over a half mile before my left foot begins to drag, though I have recently been able to get back on the treadmill after twenty minutes leg rest and am able to complete a second round of over a half mile. I recently was able to do 1.5 miles this way in one workout session. While resting my legs, I do resistance training on my arms using weights and an arm pedal machine.
There are still days and weeks when I am very much aware that my body is not one hundred percent. All the same, I would say that my EDSS number would likely be a very comfortable 2 today. My bad days today look similar to my good days one year ago and that blows my mind. My brain was locked on decline for so long that getting better has taken a whole lot of getting used to.
I intend to tack this post at the top of this blog so that it is the first post read. I journaled daily while in Moscow and you can read through my archives to get details of that time and the treatment. As I am still recovering, and will be for another 12 months, I am slow to respond to requests for information and hope that you can find that I have answered some of your questions in previous posts. If your most burning question is, “Was it worth it?” then I can say with total confidence that it is completely worth it and I would do it all again in a heartbeat. MS can be beat. I’m glad I quit waiting for an engraved invitation to go and see what all the fuss was about.