On April 28, this blog carried a post titled HSCT for MS from Russia with Love – Julia’s tale. It was the story of Julia Summers and her trip to Moscow to have HSCT treatment. The following is a continuation of her story; how she is getting on three months after receiving the stem cell transplant. I wrote this post but it first appeared in Multiple Sclerosis News Today. Oh, just one point, on Facebook, Julia Browning uses her maiden name of Summers.
But, before we talk about recovery, let’s take a look at her life before traveling from her home in the Bahamas to Moscow.
Julia said: “My EDSS was five. I could walk about 800 meters, needing to rest afterwards. I had to hold a rail to ascend and descend stairs and did it very slowly. I had to sit to put on shorts or trousers and struggled with buttons. I hadn’t exercised in over a year because my fatigue was so bad. My balance was extremely bad before Moscow. I had to wear glasses to read. I could no longer hold my camera. I have always done my utmost to hide any bladder and bowel problems, but they were bad before Moscow. I would have daily accidents.”
Yes, relapsing MS was taking its toll. In fact, she has been diagnosed with MS not once but twice.
“I was diagnosed the first time right after my first son was born, I had optic neuritis and no doctor explained MS to me. I was fit, led a healthy lifestyle and ate correctly. I had no symptoms so I ignored the diagnosis because an MRI did not show anything wrong,” said Julia.
‘A second chance at life’
“After my second diagnosis, I immediately looked into the disease and the treatments and I told my husband and doctor that I wanted HSCT. It was not a difficult decision for me; I did not want to end up being dependent on anyone or be an embarrassment to my family. My neurologist told me not to do it because it was dangerous and not proven. My sons were nervous in case I would die, but they understood my reason for wanting to have it done.”
I asked, “How is life right now?” I wanted to know if her recovery from MS was underway.
She tried to smile but it would not come, because one of her sons needs an operation and her beloved 6-year-old dog, Baxter, is seriously ill. [Update: Sadly, since this was first published, Baxter died. Had a serious heart disease.]
“I’m not doing PT like other patients but rather getting back into my old exercise regime,” she said. “I emailed Dr Fedorenko to find out how much I can exercise and if I can cause myself any problems. He has told me I am free to push myself.
“I am currently walking 13 kilometers on a cross-trainer and doing floor exercises, too. I am starting weights again, which he has advised I can do too. I also cycle — still only short distances because it makes my knees sore. I have always been an exercise junkie, so will continue to push myself to get back to my pre-MS fitness levels. I also intend to start swimming training after the holidays.
“I no longer require reading glasses. I can ascend and descend stairs with speed and no longer need to hold on. I can jump, which I haven’t been able to do for years. My balance is no longer an issue. I am able to use my camera again with no problem.
“And I haven’t had any bladder or bowel problems in over two months now. I haven’t had it checked yet but I think my EDSS is now 2.5,” she added. “I am extremely grateful to Dr Fedorenko and his amazing team for giving me a second chance at life.”
What of the neurologist who told Julia not to have HSCT because it was dangerous and unproven? “He is now offering it in the UK,” she said.