I’m Jose from Netherlands, I’m 59 years old, I am married to Tim, and I’m a mother of two daughters. I had Multiple Sclerosis (MSRR) EDSS 2.5.
Six months ago I underwent the HSCT treatment at HSCT Hospital, India. This is my story:
The first MS shup was probably in 1987. Until 2008 my family doctor unfortunately was convinced that it was psychological. For years I had a new shup for every 10 months and I had to manage by myself without any medication. I often felt that I would become depressed and would faint from pain. Everytime after a shup I had to pull myself together and go on with my life, while others thought that I occasionally had a period of not being motivated for work. In 2009 the diagnosis of MS was finally made. At that moment I was no longer able to work. In 2010 I underwent a CCVSI operation in Belgium. That temporarily gave me relief, but unfortunately the decline continued. The progress of the MS really worried me and I worked on my recovery by exercising to build up some physical condition.
In January 2017, my Australian family gave me the idea to undergo an HSCT treatment. They told me that living with MS was not an option for the long run. At that time I had not yet seen MS patients in an advanced stage, but they had, and they said I would not be able to live with this disease.
From that moment on, I was looking out where HSCT was done and how the doctors did it. The Dutch doctors did not consider it an option because of the risk and the possible poor results. However, the various foreign scientific HSCT studies showed good results. Tim is at home the one who is reading scientific research reports regularly and he rated the reports and the results as reliable and the treatment as a good chance to stop my MS.
Christmas 2017 …..I was at HSCT Hospital India
The treatment was immediately put in motion and it happened so that I got the replacement of my stem cellson the first Christmas Day. And Doctor was really sitting beside of my bed on the first Christmas Day for the replacement of the stem cells, with us all listening to a Christmas show on TV.
Because of Christmas-time I think that my family, acquaintances and friends have brought in more candles for me and that more has been prayed for me than for any other HSCT patient. When I think back to it, the tears of emotion and joy come to my eyes.
It was clear that HSCT was my only option to fight my MS. I had thought it over very well and I knew for sure that this was my only good chance to stop the MS. From that moment on I was convinced that I had to undergo the HSCT treatment. It just had to happen.
The procedure was not as unpleasant for me to undergo as I thought it would be. I had a lovely hospital bed and I could stay there endlessly without any problem. I felt weaker, but I also had nothing else to do than eating, drinking and taking care of myself, and going to the toilet. Weakness was therefore not a big problem.
I have been home in the Netherlands for six months.…Now
The first (winter) months it was great to recover at home and to have as few contacts as possible with other people. There was a long-term influenza epidemic and I did not want to be infected with it unnecessarily.
The first months were dominated by recovering as an MS patient from a heavy (chemo) HSCT, so really twice as ill. Constant recovery from Relapse Remitting I was used to, but this is a different and more vulnerable situation because I had no resistance from the chemo. I had to be very careful.
After three months I realized that during that time the high MS tension in my arms stopped and the reflexes in my arms, legs and pelvic-bottomwere normal again. And my hanging slack toe was in a normal position again. These are big improvements.
Good Bye HSCT Hospital India
And after the five weeks it was time to say goodbye. In the Netherlands I should have monthly blood tests and then send the results to doctor. He advised us to send everything to him in case of possible problems, because he is the specialist with the most knowledge.
For the return journey and for home, we were offered everything we could possibly still use. Just like a mother giving a survival kit to the child who starts living independently for the first time. We were allowed to pick it up ourselves from now on. Exciting.
Until we were on the plane I found the return trip to the airport heavier than expected. In the cool plane it went better again.
I find it amazing and somewhat hard to believe that the MS has probably stopped and that I can really live after my recovery. I no longer have to take into account an ever-recurring MS shuffle kickback. First I start with a half hour Luk Tung Kuen workout in the open air with my Chinese, Vietnamese and Dutch friends every morning.
After six months post the treatment I suddenly got new improvements:My vision improved a littleso I could buy weaker glasses; the dystrophic symptoms (feet) just disappeared and I can sense normal feelings in my foot. And I also got heat-resistant and I am able to enjoy the summerweather. Now it’s easier to write what complaints are left and it feels less complex than it was before the HSCT: A sore neck and a sore back, but the back the pain is less sharp than before.
I am feeling like standing in front of thecandy shop window of the world at my feet, able to choose what I want. I like to do a master’s study programof Psychology. However, I am still a bit too enthusiastic and I have to give myself a rest. To be able to get somewhere I have to work cautiously because the way I have to go is not that simple. I have come from far and almost stumble over my own enthusiasm. That is why I asked a young physiotherapist to coach me. We are both blank in what we will encounter and what needs to be done to get my life back on track. I try to build up activities and she indicates whether my body can still follow the pace. For both of us this is a new challenge. We do not know if it will work but it is a serious attempt.
Kind regards, José
Hospital Stay ….Interesting, Enlightening & Fun
To make all that work smoothly, me as a patient and Tim as my attendant,we were educated from the beginning by the nurses and learned what rhythm we had to keep during the day and night with taking a shower, teeth-brushing, eating and drinking. Everyone who entered our room wore a hairnet and a mouth cap. They were therefore difficult to recognize. It was a matter of being very careful to be able to remember everyone.
I often thought that I was dealing with the dearest and the most competent sister. If afterwards there was another sister, I thought of her the same. It was always a superlative. We have experienced the contact with Indian culture in a different way than would have been the case during a holiday. Thanks to the many personal conversations withabout fifty people in thirty-five days, we were able to learn about the Indian culture tosome depth.
This made the hospital admission a very interesting event and also gave us some distraction. For fun, my husband went to make wax crayon drawings from Doctor and many of the nurses. In addition to my recovery, the progress of the number of drawings was also a topic of attention and time seemed to fly during these five weeks. The department of doctor consists of a large team with young, skilled, ambitious and enthusiastic employees. The culture is mainly one of eagerness for knowledge, perfection and genuine personal interest. Cheerful voices and noises of the young team in the hallway at the nursing desk set the mood during day and night.
Afterwards I heard from a chat-friend-patient who’s been in India after me, one nurse remembered me as the ‘frightened patient’ for injections and infusions. BUT I MADE IT SUCCESSFULLY. No doubt about that. Thank you from the bottom of my heart.