Gary from the United Kingdom arrived at HSCT Hospital India with primary progressive multiple sclerosis and an EDSS disability score of 6.5. About three weeks later, he says he has feeling back in his foot. His partner Linda travelled with him as his attendant. She says he can now move his feet up and down and that the fizziness has gone.
Multiple sclerosis, usually shortened to MS, is a disease in which the immune system attacks myelin. Myelin is the protective coating around the nerve fibres of the brain and spinal cord. Autologous haematopoietic stem cell transplantation, known as HSCT, uses the patient’s own blood forming stem cells to rebuild that immune system. Before those stem cells are returned, chemotherapy clears out the faulty immune cells. Gary had this treatment at HSCT Hospital India and recorded this video with Linda while they were still in hospital.
| Gary from the UK: HSCT for MS Results at a Glance |
| Patient | Gary is from the United Kingdom. |
| Condition | Gary has primary progressive multiple sclerosis, the form of MS that worsens gradually from the start. |
| Treatment | He had autologous HSCT at HSCT Hospital India in New Delhi. |
| Attendant | His partner Linda travelled with him to India as his attendant. |
| Disability on arrival | Gary gives his EDSS score on arrival as 6.5, and Linda says this meant he had a lot of trouble walking. |
| Changes Gary names | Gary says he has feeling back in his foot after three weeks. |
| Changes Linda names | Linda says he can move his feet up and down, the fizziness has gone and a lot of his MS symptoms have gone. |
| Recorded | The video was recorded about three and a half weeks after they arrived, while both were still in India. |
| Package price today | One all inclusive price of 30,000 US dollars covers a stay of up to thirty days. |
Primary progressive MS and an EDSS score of 6.5
Gary came to India with primary progressive MS, often shortened to PPMS. In this form of MS, disability builds up gradually from the start rather than in separate attacks followed by recovery. About one person with MS in ten has this form from the outset.
His disability was measured on the Expanded Disability Status Scale, known as EDSS, which doctors use to score MS from 0 to 10. A score of 6.5 means a person needs support on both sides, such as two sticks or crutches, to walk about 20 metres without resting. Linda puts it more simply: Gary had a lot of trouble walking. The full scale is explained on the EDSS scale page, and a score can be worked out on the EDSS calculator.
An EDSS of 6.5 is also the upper limit HSCT Hospital India assesses for MS. Primary progressive MS is accepted and assessed case by case. The deciding question is whether inflammatory activity is still visible on a recent MRI scan. That is why haematology and neurology read the scans together before giving an opinion. The full criteria are set out on the HSCT eligibility criteria page.
Gary came to India with primary progressive MS and an EDSS of 6.5. If your own situation is similar, the hospital will email you the details every patient starts with. They cover the treatment, the thirty day stay and everything the one price includes. You can read them in your own time before you decide anything.
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The four stages of treatment at HSCT Hospital India, as Linda describes them
Linda walks through the treatment in the order it happened. Her account follows the four stages HSCT Hospital India uses for every MS patient, all within a single stay in hospital.
"First of all you have a treatment to flush out the stem cells from your bone marrow into your bloodstream. Then they harvest the stem cells over about six hours. You then have a day of rest. Then you have four days of chemotherapy, which can be rough. The day of rest again, then the stem cells were put back into Gary."
Linda, Gary’s partner and attendant
The first stage is called mobilisation. A short course of chemotherapy and a growth factor bring stem cells out of the bone marrow and into the bloodstream. This is what Linda means by flushing them out. The second stage is the harvest, which doctors call leukapheresis. The stem cells are collected from the blood through a machine, a little like giving blood, and then frozen and stored until they are needed.
The third stage is conditioning, the chemotherapy Linda calls rough. HSCT Hospital India uses the lower intensity, non-myeloablative regimen used in the MIST trial. Non-myeloablative means a regimen that suppresses the bone marrow without destroying it. The fourth stage is reinfusion, when the stored stem cells are returned to the bloodstream. From there they rebuild the immune system. The whole sequence is explained in the HSCT for multiple sclerosis guide.
What changed for Gary after three weeks at HSCT Hospital India
Gary names his own starting point and the first change he noticed. The change is in his foot, and he describes it after only three weeks.
"I came here at a scale of 6.5, and hopefully that will reduce, because I now have feeling back in my foot after only three weeks. Hopefully onwards and upwards now."
Gary, recorded at HSCT Hospital India
Linda describes what she has seen from beside him. She lists movement in his feet, the end of the fizziness and the loss of many of the symptoms he arrived with.
"He can now move his feet up and down. No more fizziness. A lot of the symptoms of MS have gone that he had, and this is after only like three weeks."
Linda, Gary’s partner and attendant
Gary and Linda recorded these words about three and a half weeks after they arrived, while still in hospital. Linda calls the day a rebirth day for Gary.
Patients with primary progressive MS can ask whether HSCT suits their own case. HSCT specialist doctors at HSCT Hospital India review the details each patient sends, including recent MRI scans. An HSCT case manager then replies personally, free of charge and with no obligation.
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Travelling from the UK with a partner as attendant
Linda travelled with Gary as his attendant. She says the staff have been first class, and she speaks for both of them when she thanks the hospital.
"I cannot thank them enough for what they have done for both of us."
Linda, Gary’s partner and attendant
An attendant shares the patient’s deluxe private room for the whole stay. The room has triple level HEPA air filtration, which uses fine filters to take dust and germs out of the air. That matters most in the days after conditioning, when the immune system is at its weakest. For this reason every patient stays in hospital for the whole treatment, with nursing care and monitoring around the clock.
The attendant’s stay, food and laundry are all inside the one all inclusive price, along with airport pick-up and drop-back. Neuro physiotherapy, exercise guided by a physiotherapist to rebuild strength and movement, is included in the package as well.
Primary progressive MS raises questions that depend on your own scans and your own history. Those questions are easier answered out loud than on a form. An HSCT case manager will call you at a time that suits you, at no cost.
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HSCT for MS patients from the UK
Patients from the UK start with the same free case review as every other patient at HSCT Hospital India. They fill in the online application form, and HSCT specialist doctors review it and give an initial opinion. An HSCT case manager then guides the trip, and on arrival in New Delhi a full medical evaluation confirms suitability for HSCT.
Patients come to HSCT Hospital India from more than 30 countries, and more than 1,500 people with MS have been treated in its world class facilities. Those facilities are accredited by the Joint Commission International of the USA, known as JCI-USA. They are also accredited by NABH and NABL, India’s national accreditation boards for hospitals and for laboratories. One all inclusive price of 30,000 US dollars covers a stay of up to thirty days, with no long waiting list.
Each step of the process is set out on the How It Works page. The options open to UK patients are compared on the HSCT for MS in the UK page. Margaret, another patient from the UK, tells her own story on the Margaret from the UK page. Jukka from Finland and David from the United States also came with primary progressive MS, and both describe their treatment on their own pages.
Transcript of the video
This is what Gary and Linda say in the video. The video carries automatic captions, so the text has been punctuated for reading. Filler words and false starts have been removed, and contractions are written in full.
The captions do not make out the name of the hospital, or one phrase where Linda describes his walking, and both are marked as unclear. Were is written where the captions give will, and staff have is written where the captions give staff of. Three words the captions drop are shown in square brackets. Apart from those changes, no wording has been added and nothing either of them said has been left out.
Gary: I am here at [hospital name unclear]. I came here with PPMS. I went through a series of chemotherapy and stem cell flushing.
Linda: Hi, my name is Linda. I am Gary’s partner, and like he said, we came here just over three and a half weeks ago. First of all you have a treatment to flush out the stem cells from your bone marrow into your bloodstream. Then they harvest the stem cells over about six hours. You then have a day of rest. Then you have four days of chemotherapy, which can be rough. The day of rest again, then the stem cells were put back into Gary. Staff have been first class.
Gary: I came here at a scale of 6.5, and hopefully that will reduce, because I now have feeling back in my foot after only three weeks. Hopefully onwards and upwards now.
Linda: Yes, with 6.5, which meant you had a lot of trouble walking, could walk [unclear]. He can now move his feet up and down. No more fizziness. A lot of the symptoms of MS have gone that he had, and this is after only like three weeks.
Linda: And I would recommend [the] hospital to anyone with [MS], regardless of what type [of MS] you have, because it will help no matter what type you have. I cannot thank them enough for what they have done for both of us. And this is now a rebirth day for Gary, and we are going to get on with the rest of his life. And that is it. Thank you so much.
Patients in the UK can have their own case reviewed by the HSCT specialist doctors at HSCT Hospital India before deciding anything. An HSCT case manager answers personally, free of charge, with no obligation.
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Read next
HSCT for multiple sclerosis: the full treatment guide
HSCT eligibility criteria
Jukka from Finland, primary progressive MS
David from the USA, primary progressive MS
Margaret from the UK
More patient stories from HSCT Hospital India
