Multiple Sclerosis Archives - Page 4 of 5 - HSCT Stops MS: Get Back your Quality of Life

30Aug

Real Story of MS patient from Canada who came to HSCT Hospital, India for HSCT Treatment

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Four years ago, Janet was diagnosed with Multiple Sclerosis, a permanent degenerative disease of the spinal cord and brain.

30Aug

HSCT for MS in India: Results for Gudrun R, a UK Patient, in Her Own Words

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Gudrun R travelled from the United Kingdom to HSCT Hospital India for HSCT for relapsing remitting multiple sclerosis. She arrived pushing a rollator, able to stand for two or three minutes before she needed to rest.

Five weeks later she was walking with a stick, and taking short walks without it.

Her neurology team at home had advised her against coming. She came anyway, and she filmed what happened.

Gudrun R is one of more than 1500 MS patients treated at HSCT Hospital India. The published HSCT success rates for MS are reported across the wider medical literature.

Gudrun R: HSCT for MS Results at a Glance
Patient	Gudrun R, United Kingdom
Condition	Relapsing remitting multiple sclerosis, diagnosed 22 October 2007
Treatment	Autologous HSCT at HSCT Hospital India, New Delhi
Time in hospital	Five weeks, with her husband beside her as attendant
Walking before	Rollator. Two to three minutes standing, then rest.
Walking after	Stick. Short distances with no stick at all.
Pain reported	None
In her words	“Every single day after the stem cell transplant I have achieved one thing.”

Gudrun walking with a rollator before HSCT and with a single stick by the end of her five week stay

HSCT Hospital India is a JCI-USA accredited hospital in New Delhi, accredited alongside NABH and NABL. More than 1500 MS patients have already been treated there, and patients come from 30 countries. Treatment is given in a deluxe private room with triple level HEPA air filtration, at one all inclusive price of 30,000 USD, with no long waiting list.

A world class team of HSCT specialists reviews each case and gives a free expert opinion on whether HSCT is suitable. There is no cost and no obligation. An HSCT case manager answers every enquiry personally, in English, by email or on WhatsApp, and is happy to talk it through at whatever stage the family has reached.

Get Free Expert Opinion Now

Who Gudrun Is

Gudrun R is from the United Kingdom. She was diagnosed with relapsing remitting multiple sclerosis on 22 October 2007 and lived with it for over a decade before she looked into haematopoietic stem cell transplantation, the procedure usually written as HSCT.

She travelled to HSCT Hospital India with her husband Mark, who stayed with her as her attendant for the full five weeks. She arrived on a Monday, the 14th of May.

Life Before HSCT

Gudrun describes a steady decline rather than a sudden collapse. Around the house she could manage two or three minutes on her feet, then had to stop and rest, then go again. She used a mobility scooter at home and a wheelchair for longer distances, and on the day she travelled she was walking with a rollator.

She is direct about where she believed that was heading. In her own words she was going down and down, and expected to end up bedridden within a year, or two, or three.

What Her Own Neurology Team Told Her

Gudrun raised HSCT with her MS team in the United Kingdom the previous October. They advised her against it and invited her and Mark to a seminar, which included a half hour section on stem cell treatment.

Both of them came away from that half hour feeling it had been built to put them off. The treatment was described to them as quite painful. When Mark asked about MRI scanning, her neurologist closed the conversation by telling her to go ahead and do it if she wanted to.

She took him at his word. What she experienced at HSCT Hospital India was different from what she had been prepared for, and she says so plainly on camera: no pain at all.

Why She Chose HSCT Hospital India

Gudrun and Mark researched which countries offered the procedure. She looked at Russia first, then found India, and says she had not realised until then that it was an option.

She completed the eligibility form, went through the criteria and was approved. A date was set for arrival, the information pack followed, and payment and communication were straightforward. Her account of the administration is short because nothing about it gave her trouble.

Patients at the same stage will find eligibility set out in full in the HSCT for multiple sclerosis guide, and what is available at home in HSCT for MS in the UK.

What Was Done

Gudrun received autologous non myeloablative HSCT. Autologous means her own stem cells were used rather than a donor’s. Non myeloablative means the conditioning chemotherapy is dosed to reset the immune system rather than to clear the bone marrow completely. The procedure runs in four stages.

Stage	What happens	What Gudrun reports
1. Mobilisation	Growth factor medication moves stem cells out of the bone marrow into the bloodstream.	No pain.
2. Harvest (Leukapheresis)	Blood passes through a machine that separates and stores the stem cells, then returns the blood.	No pain.
3. Conditioning	Chemotherapy clears the misdirected immune system.	No pain.
4. Reinfusion	Her own stored stem cells go back in and rebuild the immune system, with platelet support alongside.	Sitting still for the platelets, dropping from three hours to fifteen minutes across the stay.

Every nursing aspect, in her description, was spot on. She rates the food the same way, and says her own daily treatments ran as regular as clockwork.

What Changed, and When

Gudrun worked through physiotherapy in stages after her reinfusion. Within two or three minutes of one of those sessions she was walking with a stick. Her rollator went that same afternoon and she did not go back to it.

From that point she set herself one thing a day. Getting out of bed. Walking with the rollator. Walking with the stick. Then a few short distances with no stick at all.

Before HSCT	By the end of her five week stay
Walking with a rollator	Walking with a stick, rollator no longer used
Two to three minutes on her feet, then rest	Short distances covered with no stick at all
Mobility scooter at home, wheelchair for distance	Building toward doing her own grocery shopping alone
Expected to be bedridden within one to three years	Achieving one new thing every day since reinfusion

She keeps her stick with her for security and for confidence, and is already walking short distances without it. Her doctor called her every day through the stay, and she describes the response from the doctors and the physiotherapist as thumbs up, high fives and fist bumps.

Her stated aim when she goes home is to do her own grocery shopping, by herself.

Patients arrive at HSCT Hospital India at every stage of MS, from newly diagnosed to long term progressive. A world class team of HSCT specialists reviews each case individually and shares a free expert opinion on whether HSCT is suitable, with no cost and no obligation.

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In Gudrun’s Own Words

“What my expectations were, from what my neurologist had told me, were quite different to what actually happened. No pain. Absolutely no pain whatsoever.”

“Every single day after the stem cell transplant I have achieved one thing. One thing every day.”

“I would definitely, definitely recommend this. My aim is to do my shopping, my grocery shopping, by myself, and everything else by myself. That’s my aim, and I can’t wait.”

Mark, her husband, was in the room with her for the whole five weeks. His summary is that the attendant is an essential part of the stay, because however good the staff are, the patient needs support from home as well. Gudrun’s reply to him on camera was that he saved her life.

Gudrun’s Video Testimonial

Full Transcript

Gudrun: I’m Gudrun from the UK. I was diagnosed with MS, relapsing remitting, on 22 October 2007, so it’s been quite a few years I’ve had it.

I decided back last October that I’d look into having stem cell treatment. I’d heard about it, where to have it done, things like that. I approached my MS team and they advised me against it, but invited me to a seminar where they were discussing stem cell treatment. Me and my husband went along to that for a few hours. They did talks and everything, as a seminar, and they did a half hour section on the stem cell. Me and my husband found it very, very negative. He explained the treatment as quite painful. It just was trying to put us off, really. He didn’t really want anyone to do it. And my neurologist, when my husband questioned him about MRIs and all this, at the end of it just said, go ahead, do it if you want to. It felt like, you know, just go ahead if you want to.

So I said to my husband, well, yeah, I’m going ahead with it. So we’ll find out what countries to go to, find out all the information. And I came across India, because at that time I was researching Russia, and then India, because I didn’t realise. So I picked India to have a look at. I filled in the form and heard back. We filled in the forms, all the criteria, and I was approved. Then she found a date, the 14th of May, Monday the 14th of May, as the date of arrival. Confirmed all that, sent out all the information, got the ball rolling, basically. And I arrived here on the 14th of May, all sorted. Payments easy. Communication very good. Everything went very smoothly.

And I arrived here, and what my expectations were, from what my neurologist had told me, were quite different to what actually happened. No pain. Absolutely no pain whatsoever. The only uncomfortable little bit was when the platelets went in. The first few days was about three hours of being sort of motionless, and then the following couple of days after, it went down to about an hour, and then the last couple of days of the platelets it went down to fifteen minutes and I was, as I call it, back in the room.

Every nursing aspect has been spot on. Perfect. All the food has been perfect. Everything, cups of tea and biscuits, spot on. And my treatments that I do myself have been as regular as clockwork. All the exercises with my physiotherapist, stage by stage. Within two minutes, three minutes I was walking with a stick. My rollator went within that afternoon and I was walking with my stick. And today I’ve got some more exercises to do, squats and everything. I will build on that.

Every single day after the stem cell transplant I have achieved one thing. One thing every day. Like getting out of bed, walking with a rollator, walking with my stick. And I’ve done a few little walks without my stick as well, but I keep my stick on me just for security, just to get my confidence. And taking my pills all the time, and that will be ongoing for when I go home. Dr G calling every day, giving me the thumbs up. I’ve had a couple of high fives and a couple of fist bumps off the doctors, and the physio. So everyone’s been really pleased.

I would definitely, definitely recommend this. To me it’s going to put my MS behind the door and lock it. That’s how I feel about it. Previously, before the stem cell, I was just going down, down, down, down, down, to end up probably within the year, maybe two years, maybe three, bedridden. Not doing anything, because all I was doing was walking around the house for two minutes at a time, three minutes, and I’d have to stop and rest, do some more, stop and rest. It was just a downward spiral. I use my scooter at home, I use my wheelchair for long distances.

I intend to improve on that, using a trolley, and I’ll build myself up, which I will, with the exercise. My aim is to do my shopping, my grocery shopping, by myself, and everything else by myself. That’s my aim, and I can’t wait. I’m really looking forward to it.

Mark, Gudrun’s husband and attendant: Hi, my name is Mark. I came over to support my wife, Gudrun. We were met by the doctor, where we had a meeting that explained everything that was going to happen, so she expected everything to go like clockwork, which it did.

The room itself, we’ve stayed here now for five weeks, which is a long time to be stuck in one room, but the service has been excellent. We’ve been having regular food. Because we’re English speaking it took a little bit of time, but we were shown how to find the English channels, so we’re watching the BBC News, and film channels are on twenty four hours, so if you wanted to watch a film you were okay. Saying that, we were both in bed for nine o’clock, because we were up at six with the cleaner lady and the cups of tea and things, which is great.

Overall it’s been a really positive experience. She’s really happy, and I’m happy that she’s happy. The attendant is an essential part, because if the attendant wasn’t here to help me, I would have struggled a little bit.

Gudrun: You saved my life.

Mark: It’s just important to have someone to support whoever is having the treatment done, because however good these people are, they need the support from the home. And we’re just looking forward now to going home in two days’ time and carrying on the good work that these guys have done.

Talk to HSCT Hospital India

HSCT Hospital India is a JCI-USA accredited hospital in New Delhi, accredited alongside NABH and NABL. More than 1500 MS patients have already been treated there, and patients come from 30 countries. Treatment is given in a deluxe private room with triple level HEPA air filtration, at one all inclusive price of 30,000 USD, with no long waiting list.

A world class team of HSCT specialists reviews each case and gives a free expert opinion on whether HSCT is suitable. There is no cost and no obligation. An HSCT case manager answers every enquiry personally, in English, by email or on WhatsApp, and is happy to talk it through at whatever stage the family has reached.

Get Free Expert Opinion Now

30Aug

Real Story of Athena B from Tunisia who came to HSCT Hospital, India for HSCT Treatment

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I researched HSCT groups on Facebook and received encouragement from previous patients who had HSCT at HSCT Hospital India

29Aug

Mr David from USA shares his experience 11 months after HSCT at HSCT Hospital, India.

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My MS journey started like most people. My daily symptoms included numbness in my legs and feet,

29Aug

HSCT for MS Review: Kathryn from the USA on HSCT in India

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Kathryn from the United States had lived with multiple sclerosis for 30 years when she came to HSCT Hospital India for treatment. Her friend of 40 years, Corrinne, travelled with her as her attendant. By the end of the treatment, Corrinne says, Kathryn could walk better, could feel things she had not felt before, and her vertigo had gone.

In MS, the short name for multiple sclerosis, the immune system damages myelin. Myelin is the insulating layer around the nerve fibres of the brain and spinal cord. HSCT, short for autologous haematopoietic stem cell transplantation, uses the patient’s own blood forming stem cells to rebuild that immune system. Chemotherapy first clears out the faulty immune cells, and the stored stem cells are then returned to grow new ones. Kathryn and Corrinne recorded this video in hospital, shortly before Kathryn went home.

Kathryn from the USA: HSCT for MS Results at a Glance
Patient	Kathryn is from the United States.
Condition	She had lived with multiple sclerosis for 30 years.
Treatment	She had autologous HSCT at HSCT Hospital India in New Delhi.
Attendant	Corrinne, her friend of 40 years, travelled with her as her attendant.
Physiotherapy	She had physiotherapy every day of her stay, and she says it was therapy she had never had before.
Walking	Corrinne says Kathryn can walk better.
Feeling	Corrinne says Kathryn can feel things she could not feel before.
Vertigo	Corrinne says the vertigo that was the first symptom of Kathryn’s MS has gone.
Recorded	The video was recorded in hospital, shortly before Kathryn went home.
Package price today	One all inclusive price of 30,000 US dollars covers a stay of up to 30 days.

Why Kathryn came to HSCT Hospital India after 30 years of MS

Kathryn had lived with MS for 30 years before HSCT, and Corrinne had watched the disease progress through all of those years. Corrinne describes the trip to India as Kathryn’s final effort to get help.

"This was her final, [last ditch] effort to try to get help to [delay] all of the processes that this disease has caused over 30 years."

Corrinne, Kathryn’s friend and attendant

Every patient’s route to HSCT Hospital India starts with a free case review. HSCT specialist doctors read the patient’s medical records before any trip is planned. Their initial opinion says whether HSCT suits that patient’s case.

HSCT Hospital India emails its brochure to any patient who asks for it. The brochure covers the treatment, the 30 day stay and everything the one price includes.

Get HSCT India Brochure Emailed to you

What HSCT at HSCT Hospital India involved for Kathryn

Kathryn says the doctors and nurses looked after her personal needs as well as her medical ones.

"I have had nothing but great service and great doctors and great nurses here. They are very concerned about not only my health needs but my personal needs."

Kathryn, MS patient from the United States

The treatment follows four stages within one stay in hospital. The first is called mobilisation. A short course of chemotherapy and a growth factor injection move stem cells out of the bone marrow and into the blood. In the second stage, the harvest, those stem cells are collected from the blood by a machine, a little like giving blood. Doctors call this step leukapheresis, and the collected cells are frozen until they are needed.

The third stage is conditioning, when chemotherapy clears out the immune cells that were attacking the nerves. HSCT Hospital India uses a non-myeloablative regimen, which suppresses the bone marrow without destroying it. It is the same approach used in the MIST trial. In the fourth stage, reinfusion, the stored stem cells go back into the bloodstream so they can rebuild the immune system. Each stage is explained in more detail in the HSCT for multiple sclerosis guide.

How daily physiotherapy helped Kathryn during her stay

Kathryn had physiotherapy every day of her stay, and she says it was therapy she had never had before. In the video she calls it physical therapy.

"On a daily basis I receive physical therapy that I have never had before, which has helped me to improve immensely, to the point that I am getting to go home real soon."

Kathryn, MS patient from the United States

Neuro physiotherapy is included in the package at HSCT Hospital India. It is exercise guided by a physiotherapist and planned to rebuild strength, balance and movement. Because the whole treatment is given as an in-patient stay, sessions can take place every day, as they did for Kathryn.

Patients with MS can ask whether HSCT suits their own case. HSCT specialist doctors at HSCT Hospital India review the details each patient sends. An HSCT case manager then replies personally, free of charge and with no obligation.

Get Free Expert Opinion Now

What changed for Kathryn by the end of treatment, according to Corrinne

Corrinne has been Kathryn’s friend for 40 years and watched her MS progress over 30 of them. She says Kathryn had never felt so good or looked so good as she did at the end of her stay.

"She can feel things that she could not feel before. Her mind is better, and her overall attitude and body is just better."

Corrinne, Kathryn’s friend and attendant

What Corrinne reports after Kathryn’s HSCT
Walking	Corrinne says Kathryn can walk better because of the programme.
Feeling	She says Kathryn can feel things she could not feel before.
Thinking	She says Kathryn’s mind is better, and so is her overall attitude.
Bowel function	She says Kathryn has full function again, which she had not had in 30 years.
Vertigo	She says the vertigo that was the first symptom of Kathryn’s MS is now gone.

Corrinne also credits the doctors with caring about what Kathryn wanted, as well as what she needed.

"The doctors care about everything, not just their own needs and wants, but they care about her needs and wants at the same time."

Corrinne, Kathryn’s friend and attendant

Travelling from the United States with a friend as attendant

Corrinne came from the United States as Kathryn’s attendant, and the two of them shared a deluxe private room for the whole stay. An attendant stays in the patient’s room throughout treatment, so the person who travels with the patient is close by at every stage. The room has triple level HEPA air filtration, which uses fine filters to take dust and germs out of the air.

The filtration protects the patient in the days after conditioning, when the body’s defences are at their lowest. For this reason the whole treatment is given in hospital, with nursing care around the clock. The attendant’s stay, food and laundry are included in the one all inclusive price, along with airport pick-up and drop-back.

Patients travelling from the United States usually have practical questions about flights, the medical visa and who comes with them. An HSCT case manager will call at a time that suits the patient, at no cost.

Request a Call Back

HSCT for MS patients from the United States

Patients from the United States begin with the same free case review as every other patient at HSCT Hospital India. They complete the online application form, and HSCT specialist doctors review it and give an initial opinion. An HSCT case manager then helps plan the trip, and on arrival in New Delhi a full medical evaluation confirms that HSCT suits the patient.

More than 1,500 people with MS, from over 30 countries, have been treated in the world class facilities of HSCT Hospital India. 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 30 days, and there is no long waiting list.

Cost and access for American patients are set out on the HSCT for MS in the USA page. David Ellis, who travelled from California, tells his own story on the David Ellis from the USA page. Each step of the process is described on the How It Works page. The checks behind the initial opinion are on the HSCT eligibility criteria page.

Transcript of the video

This is what Kathryn and Corrinne 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 spell Kathryn as Catherine and do not render her friend’s name clearly, so both names are taken from the hospital’s record. The name of the hospital is also unclear in the captions and is marked as unclear. Words in square brackets replace words the captions garble, or add one the sentence needs. Apart from those changes, no wording has been added and nothing either of them said has been left out.

Kathryn: My name is Kathryn. I am from the United States. I am at [name unclear] hospital in India, having a stem cell [transplant] for MS. [The] hospital is [JCI accredited] and has very good doctors, and they have excellent [staff]. And I have had MS for 30 years. I have had nothing but great service and great doctors and great nurses here. They are very concerned about not only my health needs but my personal needs. On a daily basis I receive physical therapy that I have never had before, which has helped me to improve immensely, to the point that I am getting to go home real soon. And I will spread the word [about] that hospital and the stem cell transplant program.

Corrinne: My name is Corrinne [family name unclear]. I am from the USA, and I have been Kathryn’s friend for 40 years, and I have watched her MS progress over 30 years. And until she came here to this wonderful place, she has never felt so good and looked so good, and her body is just in so much better shape. This was her final, [last ditch] effort to try to get help to [delay] all of the processes that this disease has caused over 30 years. And because of this program she can walk better. She has no [word unclear]. She can feel things that she could not feel before. Her mind is better, and her overall attitude and body is just better. Her [word unclear] and [bowels] have full function, which she never had in 30 years. She does not have vertigo, which was her first primary symptom of the disease. It is now gone also. And the staff here, I cannot tell you how great the staff is here. The doctors care about everything, not just their own needs and wants, but they care about her needs and wants at the same time, and trying to get her better from the ravages of this disease.

Patients in the United States 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.

Get Free Expert Opinion Now

SU from UK shares his experience of Successful HSCT for MS at HSCT Hospital in India

by admin

Following extensive research into various therapies available all over the world for MS, We found HSCT hospital in India to be a possible option for treatment.