My feed
Premium

Please
or
to access all these features

Mumsnet doesn't verify the qualifications of users. If you have medical concerns, please consult a healthcare professional.

Autoimmune disease

MS

23 replies

PlanktonCarpet · 14/09/2017 18:05

Hi,

I just want to put this here in case it helps anyone.

I has MS, rr and in the last year my balance and the fatigue were awful.

I decided to to HSCT and went to Mexico and the start of the year. If you email them they will respond quickly.
Russia is also very good.

MS is now dead for me. I haven't had the fatigue at all since I've been back and there has been a lot of improvement knocking 1.5 off my EDSS.

I hate the thought of someone with MS or RA not knowing about it.

People self fund or fundraise (costs about £43k)

There are a lot of FB groups and information sites, please look.

I hope it helps someone.

Message from MNHQ - we've edited this post to remove a website link. OP - we're going to drop you a note on this Flowers

OP posts:
Toddlerteaplease · 16/09/2017 00:01

I've got RRMS and had Alemtuzemab and other treatments previously. I've heard of two people who have been to Russia for stem cell therapy. Neither of them have had any benefit from it. And my MS team are convinced that 3-4 weeks is not long enough for the treatment to be the proper stem cell therapy that's currently being trialled In the UK.

PlanktonCarpet · 16/09/2017 20:35

Stem cell therapy is very different to HSCT. I personally wouldn't have bothered with stem cell therapy.

HSCT kills the faulty immune system and gives you a new one, that has no memory of MS.

HSCT has a massive success rate.

OP posts:
PlanktonCarpet · 16/09/2017 20:40

Neurologists like you to take the drugs. Pharma companies fund trials, trials ensure papers get published, doctors make names for themselves. One neurologist actually told me this.

My neurologist was unconvinced and urged me to take the drugs. However since I did it and my EDSS has gone down her eyes have been opened and she is researching it herself.

OP posts:
PlanktonCarpet · 16/09/2017 20:42

chrisselzershsct.wordpress.com/ This guy is doing it now.

knockoutmsblog.wordpress.com/ This lady did it a few months ago.

Please have a read.

OP posts:
PlanktonCarpet · 17/09/2017 22:55

Shocking that you removed an informative link! The link had nothing to do with fundraising, it was HSCT information.

OP posts:
PlanktonCarpet · 17/09/2017 23:05

The link you removed had HSCT information, the worldwide clinics that do it and how to contact them. That was the point.

OP posts:
PlanktonCarpet · 17/09/2017 23:45

HSCT History
HSCT or Hematopoietic Stem Cell Transplant, is the only existing scientifically proven treatment, currently available that completely halts disease progression of Multiple Sclerosis. It is not a new procedure, as it has been used to treat cancer since the 1960’s, but it is a relatively new treatment for MS. Perhaps ‘new’ is the wrong word – The first HSCT performed specifically for an autoimmune disease (uveitis) was performed in 1985 by Prof. Shimon Slavin in Israel. The patient remains cured today. The first HSCT performed specifically for MS was at George Papanicolaou General Hospital, Thessaloniki, Greece in 1995. However, there were many observational case studies before then focusing on the success of HSCT for MS patients that were transplanted for cancer who simultaneously had their MS halted, as an unanticipated side effect of the treatment. All of the early studies that followed, also clearly established the now (well understood) probability that transplantationearlier in the disease life cycle is more beneficial than transplanting later in the disease evolution, when there is a greater degree of irreversible disability.

HSCT in the USA

Dr. Richard Burt at Northwestern University, Chicago, started HSCT treatment back in 1996. Prior to that, while he was a Fellow working at Johns Hopkins Hospital in Baltimore, he noticed that the leukemia patients he was treating needed to be “re-vaccinated” because the protection from childhood diseases like the measles and mumps was being lost. The cells affected by transfusion treatments were losing the “memory” of these original childhood vaccinations. “Maybe,” thought Dr. Burt, “if we could get bad, diseased cells to lose their memory, we could reprogram them with ‘good’ memories and help patients with autoimmune diseases.” This reprogramming would depend on adult stem cells—tiny building blocks found in the body–if it was going to work.

He first tried out his idea on animals in the research lab and—it worked! Not long afterwards the FDA gave its approval for the adult stem cell therapy to be used on people suffering from Multiple Sclerosis, and again, it worked. Now, 14 years later, Burt and his team of researchers at Northwestern University are using this technique to help treat patients suffering from some 23 different diseases. There is no ethical dilemma as the treatment uses adult stem cells extracted from the patient’s own blood, and no embryonic stem cells are involved.

To date, HSCT is the only scientifically proven treatment that STOPS underlying disease progression in all types of MS and restores normal immune self-tolerance and produces lasting curative symptomatic improvement for the majority of MS patients. To date over 2,000 patients have been treated world-wide, and the number continues to rise daily. I hope to be included in that numbed one day soon!

(Copied from hsctstopsms.com)

OP posts:
PlanktonCarpet · 17/09/2017 23:46

What is HSCT?
HSCT acts as a cure for MS by either completely (myleoablative) or partially (non myleoblative) wiping out the memory of the body’s immune system. This is achieved by effecting a change of the body’s overall T and B-lymphocyte (antigen binding) collection thus making autoimmunity inactive and consequently causing the body’s immune cells to become “antigen naive”. This results in restoring immune self-tolerance. Ultimately this stops the underlying MS disease activity & progression and is where the “resetting” the immune system phrase is coined. After HSCT is performed the body then has a chance to repair or reconfigure adaption to existing neural damage without the hindrance of ongoing disease activity and progression, often resulting in improvement of existing conditions and ongoing recovery of lost function.

Chemotherapy is used to destroy the T- and B-lymphocytes of the body which carry the faulty memory so that virgin cells which are deprogrammed, may replace them. These are generated by the bone marrow. Successful HSCT is entirely dependent on the chemotherapy aspect of the treatment, which is why simply injecting stem cells into the body does not render the body’s immune system self-tolerant. It is imperative that the chemotherapy destroy the bad cells before the newly harvested virgin cells that have been produced in the bone marrow be reintroduced to the body to get the new immune system firing on all pistons!

STIMULATING PRODUCTION OF STEM CELLS.

Injections are given twice a day for approximately 4 days in order to stimulate production of stem cells. This process, which causes extra stem cells to be produced, is known as mobilization. This is a very straightforward process and mild bone pain if experienced can be alleviated with over-the-counter painkillers.

COLLECTION OF STEM CELLS

Collection of stem cells is a process called “Apheresis”. Some pain in the hip has been reported but in most cases it is a pain free procedure. Blood is withdrawn through a catheter and circulated through a cell-separating machine, which separates and collects white blood cells, including the stem cells. The remaining blood cells are returned to the body at the same rate that they were removed. After collection the cells are frozen and stored under special conditions until they are needed for transplant (reintroduction to the body).

ADMINISTERING CHEMOTHERAPY

Administration of chemotherapy takes four days. This will wipe out the existing immune system. Analysis of the blood will be used to evaluate when the system is adequately prepared in terms of “wipe out” for the stem cell transplantation. Once it has been determined that this has taken place and the body is effectively devoid of its previously malfunctioning immune system, isolation will begin and only attending medical staff will be allowed access to minimize any possibility of germs entering the sterile environment while the immune system is effectively non existent.

PERFORMING THE STEM CELL TRANSPLANT

Once chemotherapy is completed the previously harvested stem cells are returned to the body. It is similar to a blood transfusion. People have commented on symptoms that include nausea, diarrhea, cough fever, chilling and often a headache. Medication is provided to decrease these effects. It is worth remembering the associated discomfort is short lived and the trade off at the end of the day is incomparable in terms of what it offers! The frozen stem cells are thawed in warm water quite simply and infused back into the body.

THE ENGRAFTMENT PART OF THE PROCEDURE

Engraftment is the word given to the process when the harvested stem cells that have been reintroduced to the body begin to grow (engraft). This usually takes between one and three weeks and confirms that the new immune system is now producing blood cells as expected. Aching in the bones, lower back thighs and pelvis has been reported during this phase, but the new immune system will be totally devoid of memory of any MS! Once the new system is back to operating normally the blood count will rise and the white cells in the blood will begin to resume their job, which is to fight off bacteria and prevent infections. Shortly after this happens the hospital releases the patient, but it must be remembered that the immune system will remain compromised for some time. Caution must be observed in terms of exposure to any sort of illness for the next year at least.

THE RECOVERY PHASE

The complete recovery phase is acknowledged as taking twelve to eighteen months. Interestingly in the same way no two people have exactly the same symptoms from MS, recovery works in a similar way. Some people have reported seeing continued improvement long after the procedure. They claim that improvements have taken place as long as 5 years post transplantation. Depending on the type of MS diagnosed prior to receiving treatment, results can vary considerably.

(Copied from hsctstopsms.com)

OP posts:
TheClaws · 18/09/2017 07:43

The complete recovery phase is acknowledged as taking twelve to eighteen months. Interestingly in the same way no two people have exactly the same symptoms from MS, recovery works in a similar way. Some people have reported seeing continued improvement long after the procedure. They claim that improvements have taken place as long as 5 years post transplantation. Depending on the type of MS diagnosed prior to receiving treatment, results can vary considerably.

This interests me the most. HSCT is an extreme therapy that may have variable results over a number of years. Moreover, it is a new therapy that is quite expensive and only available in a limited number of countries. I'd like to see more studies over a longer period of time before I decide to do that to my body.

I think to call out practitioners that are prescribing the best therapeutic drugs for MS out there - drugs that weren't available just a couple of years ago - is unwarranted.

PlanktonCarpet · 18/09/2017 08:28

For me MS was extreme. I'm glad I did it, the aim was to halt progression, I've seen improvements so I'm really happy.

They've been doing this for years and there have been huge trials. It's not new.

I will call out practitioners that do not have the patients best chance of halting this horrible disease at the forefront, and are more interested in making sure they have patients on drugs to pad out their numbers. A friend I did the HSCT with had been on 5 different drugs over the years, awful side effects from them all. Now she doesn't need to take anything.
The drug 'might' slow it down a little. HSCT cures it. No brainer for me.

They do it in most countries, in England, Sheffield and London for sure.

Over 80% of people disease is stopped totally, there is no MS drug that does that.

OP posts:
PlanktonCarpet · 18/09/2017 08:33

www.sth.nhs.uk/autologous-haematopoietic-stem-cell-transplantation-for-multiple-sclerosis/ - Sheffield

Post edited by MNHQ we don't know whether the person featured has agreed to have their facebook details appear here.

OP posts:
TheClaws · 18/09/2017 09:19

I'm glad it has helped you, Plankton. I have a friend who is doing very well after HSCT too. But some of your claims are false. They don't "do it in most countries". It hasn't been around for years and there haven't been "huge" trials.

I have a wonderful neurologist that has helped me for more than twenty years through a number of therapies (some with side-effects). I'm offended at the notion she's only doing it to fill quotas. Not everything is a conspiracy.

PlanktonCarpet · 18/09/2017 09:38

I don't think everything is a conspiracy at all. I do believe a lot of neurologists benefit from having patients on drugs. There are good ones out there, but my experience is few good ones. You don't need to offended.

I've met with neurologists that did HSCT for people in the early 90's, and still do it now..
I applied to many countries and got accepted in 5, criteria for others was you had to have tried and failed 2 DMD's. They really do do it in most countries. Unfortunately it just not offered to people and most of the time people have to go private.

Glad your friend is doing well Smile

OP posts:
PlanktonCarpet · 18/09/2017 09:47

www.hsctstopsms.com/hsct-facilities-worldwide/

There are more too, I have a big list somewhere. Switzerland and Spain definitely also do it.

OP posts:
TheClaws · 18/09/2017 09:51

It is only offered in 14 countries. Not most countries.

I am offended because you keep saying doctors are drug-pushers, basically. These "drug-pushers" have kept me out of a wheelchair.

PlanktonCarpet · 18/09/2017 10:01

There are more than 14 countries, like I said, I have a big list somewhere. If you look for JACIE accredited facilities that is extensive. I contacted all of them, most do it.
The weblink I put above I don't think has been updated for a while.

No, I said some benefit. I'm glad you feel yours has helped you. The ones I have seen over the years have been crap.

OP posts:
PlanktonCarpet · 18/09/2017 10:04
OP posts:
TheClaws · 18/09/2017 10:06

Can I just ask - no judgement - are you an anti-vaxer as well?

PlanktonCarpet · 18/09/2017 10:10

Goodness no, of course I vaccinate. What an odd question.

Really just because my experience of neurologists has obviously been vastly different to yours?!

Bizarre question,

OP posts:
Toddlerteaplease · 18/09/2017 10:27

I don't understand how only four days of chemotherapy an completely wipe out your immune sister. From what I understand, it takes several weeks of absolutely brutal chemotherapy to fully wipe it out. Similar to having a bone marrow transplant.

Toddlerteaplease · 18/09/2017 10:31

With hair loss and all the other things that go with it.

PlanktonCarpet · 18/09/2017 10:40

4 days is enough. You go into nutropenia so at that point your immune system is basically non existent.

If you have questions contact them
[email protected] - Anastasia is the lady you want here.
OR
[email protected] - Danielle Smith is the lady you want here.

OP posts:
PlanktonCarpet · 18/09/2017 10:41

All my hair did fall out. I looked like an egg Grin

OP posts:
Please create an account

To comment on this thread you need to create a Mumsnet account.