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Thread: Extreme cure for MS reboots immune system

  1. #1
    Distinguished Community Member Sherman Peabody's Avatar
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    Default Extreme cure for MS reboots immune system

    A radical treatment for multiple sclerosis has stopped the disease progressing in 70 per cent of those who have tried it, but one person in the trial died.

    By Clare Wilson

    It’s a terrible dilemma: a treatment that might cure you or kill you.

    This is what some people with severe multiple sclerosis now face. A radical approach that wipes out the immune system and then reboots it with stem cells has stopped the devastating disease in its tracks in 70 per cent of the people who have tried it. But of the 24 people taking part in the trial, one died from liver damage and an infection while their immune system was impaired.

    “I took a leap of faith. I felt like I would be kicking myself if I didn’t take this chance,” says Jennifer Molson of Ontario Canada, who had the treatment. When she decided to try it 14 years ago, she was using a wheelchair. About 18 months later, she began to notice physical improvements, and within three years she had gone back to work. Today, her life has returned to normal.

    In multiple sclerosis, the immune system attacks the protective coating around nerve cells in the brain, spinal cord and optic nerves. It tends to come and go in flare-ups that get worse over time, and can eventually leave people paralysed and blind. Existing drug treatments can lessen the severity or frequency of attacks but are not a cure and don’t work for some.

    Although the immune reboot is only supposed to stop MS, not reverse it, some people regained much of their functioning in the years that followed, suggesting the nervous system slowly repairs itself if the damage is not too severe.

    Accidental cure

    The treatment was discovered in people with leukaemia who also happened to have MS. Leukaemia is a cancer of the immune cells, and can be treated by first extracting some of a person’s bone marrow cells and then killing all the immune cells that remain in the body with toxic chemotherapy.

    The stored bone marrow sample is then purged of cancerous cells and injected into the person’s blood to repopulate their immune system. Surprisingly, this treatment happened to be effective not only for leukaemia but also MS.

    We don’t know what makes immune cells attack nerve cells in MS. One theory is that it is triggered by viruses that have similar proteins to those on the surface of human nerve cells. It could be that rebooting the immune system cures MS because any memory of a virus like this is wiped out.

    Several centres around the world are now offering this procedure as an experimental treatment for people who have an aggressive form of MS and who are not benefiting from standard drugs. Because of the serious risk of infection while the immune system is down, most places offer a milder form of chemotherapy, but this makes it more likely that some of the nerve-targeting immune cells will survive.

    Radical treatment

    The regime in the latest study – which began in 2000 but was published this week – is more intense, designed to kill all the immune cells in a person’s body. “It’s important that patients recognise that this is not a cakewalk,” says Mark Freedman of Ottawa Hospital Research Institute in Ontario.

    As well as the risk of infection, people lose their hair and fingernails, and suffer nausea and diarrhoea. The chemotherapy renders them infertile by killing sperm or eggs, and pushes women into early menopause. They tend to stay in hospital for a month, with their new bone marrow infused around day 11, before the last of their old immune cells have died off.

    But infection is still a grave risk. Freedman hopes that as the approach is refined, the death rate will come down. At the moment it is about 1 per cent of those treated, he says, not as bad as the 4 per cent that the 24-person trial suggests. The team is now using a different version of one of the chemotherapy drugs that is less likely to cause the liver complications that may have contributed to the person’s death in this study.

    John Snowden of Sheffield Teaching Hospital in the UK says that less intense chemo regimes – such as the one his centre uses – are a safer option. “We still need to find the sweet spot between toxicity and effectiveness,” he says.

    The approach of rebooting the immune system is also being investigated for other severe autoimmune diseases. These include Crohn’s disease, in which the immune system attacks the bowel, and a rare skin condition called scleroderma.

    https://www.newscientist.com/article...-can-be-fatal/

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    An extreme new treatment has cured patients of MS

    David Nield
    10 June 2016

    17 of 24 patients saw their MS halted or reversed.

    An extreme new treatment for multiple sclerosis (MS) has been shown to stop the disease in its tracks, hinting at the possibility of a cure.

    In a 24-person clinical trial based in Canada, one person who was previously confined to a wheelchair was able to live a normal life again after receiving the treatment.

    But there's a catch - the treatment is so severe, it caused one fatality, so the team behind it is now working on refining the drugs and procedures involved to make them safe for all MS sufferers.

    The new treatment was actually discovered by accident by a team at the Ottawa Hospital Research Institute in Canada, through their work with patients diagnosed with both leukemia and multiple sclerosis.

    One way of tackling the cancer is by extracting bone marrow cells, killing off the remaining immune cells, then injecting the bone marrow (once purged of cancer) back into the body to repopulate the immune system.

    It turns out this immune system 'reboot' is also very effective at fighting MS. The disease causes the immune system to attack the protective coating that shields nerve cells in the brain, spinal cord, and nervous system. And after noticing the positive results on the condition in leukaemia patients, the researchers decided to trial the new technique just on MS patients, to try to flush out the immune system and effectively start again.

    The treatment is designed to stop the progress of MS, but in many cases, it's actually reversing the progress of the disease, suggesting that the nervous system can sometimes repair itself after MS takes hold, reports Clare Wilson for New Scientist.

    The trial began in 2000, and overall, 17 of the 24 people involved in the study saw their MS halted or reversed.

    https://www.newscientist.com/article...ent-for-my-ms/

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    ‘People said I was mad’: Why I chose extreme treatment for my MS

    By Clare Wilson

    Jenny Remington-Hobbs was warned that her attempt to stop MS by rebooting her immune system might result in 'coming home in a coffin'

    “One of my doctors said ‘I hope you don’t come home in a coffin’,” says Jenny Remington-Hobbs, who was diagnosed with multiple sclerosis in her late 20s, while working as a psychiatrist in the UK.

    A new treatment for MS can cure the disease by destroying the immune system and then rebooting it. At the moment, this approach is only suggested for people with severe and aggressive MS, because there is up to a 5 per cent risk of dying from the chemotherapy it involves. But even people with less severe forms of the disease can end up in a wheelchair or go blind, so some are seeking out similar treatments privately, as Remington-Hobbs decided to do.

    “I read about the treatment in New Scientist but no one knew anything about it so I had to do lots of research,” says Remington-Hobbs.

    She managed to find a US centre that offered the therapy as part of a trial for people with severe MS. “I did not meet the requirements as I had not had MS for long enough with enough relapses.” So she decided to pay for it herself. “I was discouraged by pretty much everyone I knew. People said I was mad,” she says.

    Although this treatment involved a less intense form of chemotherapy than the kind used in the new study, she was told that the death rate was between 1 and 5 per cent. Despite the risks, Remington-Hobbs decided to go ahead. “MS is a ticking clock. No one knows which is the relapse that’s going to cause significant disability. And I was broken in terms of the fatigue. My thinking was foggy. I could no longer work.”

    No regrets

    She underwent treatment in 2011, but warns it’s no quick fix. She developed a blood-clotting disorder and struggled with the premature menopause triggered by the chemotherapy. “That was one of the hardest things. The year that followed was quite a dark time.”

    But the treatment not only stopped the MS in its tracks, but pushed it into reverse, and she has now made a full recovery.

    She has even managed to have a daughter. Before the treatment, she had an experimental procedure to preserve her fertility – ovary freezing, which is similar to egg freezing. After the MS treatment, she had slices of the ovary reimplanted, which reversed the menopause and enabled her to conceive.

    Now in her mid-30s, Remington-Hobbs is a therapist in Lusaka, Zambia, and has no regrets. “It’s a massive decision. I knew my life would never be the same. But I thought: I know where this is going. Why wait?”

    https://www.newscientist.com/article...ent-for-my-ms/
    Last edited by Moderator #7; 10-29-2017 at 08:14 AM. Reason: Please don't put quotes around your links! We can't click directly to them!

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  3. #2
    Distinguished Community Member BBS1951's Avatar
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    I have read about this treatment. There is also a neurologist in NYC called Saud Saddiq MD who has been using a stm cell approach that doesn’t have these fatal side effects. I would def try it in his Phase II trial which has just started.

    Here is a written interview of him
    http://www.wheelchairkamikaze.com/20...diq-tisch.html

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    I think all this stem cell research will eventually end up being a godsend for all sorts of diseases. probably not in m lifetime anymore, but I'm hopeful for the next generation.
    ...I am not a doctor nor medical professional, and don't pretend to be one, here... :o

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  7. #4
    Distinguished Community Member Sherman Peabody's Avatar
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    Wow! Great article! Here it is below...

    FDA approves phase II MS stem cell study

    By Marc Stecker

    In some dramatic news regarding stem cell treatments for Multiple Sclerosis, the FDA has given its first ever approval for a Phase II Multiple Sclerosis regenerative stem cell trial to the Tisch MS Research Center of New York.

    Most previous attempts at using stem cells to repair MS damage have involved intravenously infusing a basic type of stem cell (called mesenchymal stem cells) back into the patient from which they were taken. The Tisch Center takes this approach several steps further, using proprietary methods to transform raw mesenchymal stem cells into a type of stem cell known as neural progenitors, which are specific to the central nervous system. The cells are then injected directly into the spinal fluid of trial subjects, where, in theory, they should be more effective than raw mesenchymal stem cells at effecting repairs and combating the disease. The Phase I results of the Tisch center’s trial thus far have been quite impressive, offering MS patients worldwide a glimpse into the future of MS treatments and some tangible reasons for hope.

    A press release put out by the Tisch Center provides details on what has already been accomplished in the Phase I trial, and what is being planned for the upcoming Phase II study:

    "Our unprecedented Phase 1 results have propelled us into the next phase of research," said Dr. Saud A. Sadiq, Chief Research Scientist at Tisch MSRCNY, the study's principal investigator. He added, "No treatment has shown reversal of established disability until now. The objective improvement experienced in bladder function, vision and walking speed in both secondary and primary progressive MS is remarkable. We now plan to establish efficacy of stem cells as a reparative therapy in Phase II."

    The Phase II trial will be a double-blind, placebo-controlled, randomized trial with forty patients in a crossover design. Stem cells are taken from the patient’s bone marrow and manipulated to become brain-like neural cells, a process created and found only at Tisch MSRCNY. All treatments and research will be conducted at the Tisch MS Research Center of New York and will expand to include an additional leading MS center.

    The main obstacle in intiating the study is the need for critical funding. Once funding is obtained, patients will be recruited and the study is anticipated to commence in the summer of 2016.

    I had the chance to talk with Dr. Sadiq (who just so happens to be my MS neurologist) about this ongoing and groundbreaking MS stem cell trial, as well as other stem cell related topics. The following interview has been lightly edited for clarity…

    MS: How long did it take the Tisch Center laboratories to develop the proprietary process to produce neural progenitor cells from raw mesenchymal stem cells?

    Dr. Sadiq: It took about 2 years of intensive lab work, and our lab is the only lab in the world currently using this process.

    MS: Is this type of stem cell treatment considered a cure, or can patients expect to require repeated treatments in order to maintain whatever benefits they achieve?

    Dr. Sadiq: All of this is still in the experimental phases, so we really don’t know how long the treatments will need to be continued in order to maintain benefit. It’s likely there will be an initial induction period where we will do a number of frequent treatments to induce repair and then to maintain the benefits I think it will require less frequent treatments. But I anticipate that some treatments will need to be given for the duration of the illness, until we find the cure.

    MS: What was the treatment protocol during the Phase I trial, and what will the treatment protocol be during the Phase II trial?

    Dr. Sadiq: In Phase 1 we did 3 treatments over the course of one year, which seemed necessary in order to get some benefit. We don’t know whether the Phase I patients will continue to show benefit or not without further treatment. In the Phase II trial, we are proposing six treatments over a year followed by no treatments over a year to see if benefits are sustained. There will be a control group as well, who will get no treatments the first year and then get six treatments the second year. I anticipate less frequent treatments will be needed to maintain benefit for the duration of the disease until we find a cure.

    MS: And would this hold true for any type of regenerative stem cell treatment, such as those being offered by some of the for-profit clinics at which many patients are seeking a single treatment or a single round of treatments over a relatively short period of time?

    Dr. Sadiq: Most likely yes, it’s been shown that one treatment probably would be insufficient to even start regeneration. You’ll need multiple treatments…

    MS: Are the effects of the regenerative stem cell treatments cumulative?

    Dr. Sadiq: You know, we don’t know that yet, in the Phase II trial we intend to collect data on this question…

    MS: How much more effective are the neural progenitor cells than the raw mesenchymal stem cells (MSCs) that have been used in other trials?

    Dr. Sadiq: Well, as far as I’m aware, the way MSCs have been used in trials so far, there’s not been a single trial that has shown real substantial benefit with MSCs. There’s been some very mild improvements seen in the Cambridge trials, which used one dose given intravenously. It could be that they didn’t use fresh cells or they didn’t use the proper route of administration. Our trial administers the cells intrathecally, directly into the spinal canal. It could be that raw MSCs are in fact effective, but the trials I’ve seen didn’t use multiple dosing. So it’s very difficult to compare the two. But in our hands we found that neural progenitor cells given intrathecally are more effective than raw MSCs.

    MS: How much funding is needed for the Phase II trial?

    Dr. Sadiq: For the Phase II trial alone we need about $3 million, but for the actual support that we need to build out and expand the labs I’m looking to get $10 million. We need expanded lab facilities and an animal testing facility in place to properly conduct the Phase II trials.

    MS: And how much money have you already raised?

    Dr. Sadiq: Planning for Phase II we just started, so we haven’t raised anything yet. We have talked to the National Multiple Sclerosis Society, we’ve talked to the National Institutes of Health. We are submitting a grant proposal to the NIH, and the MS Society Is in consultation with me currently to try to arrange funding. We’ll will have to apply for funding grant from the NMSS. We do have a pledge of about $3 million from one donor.

    MS: Wow, you have a pledge of $3 million from one donor?

    Dr. Sadiq: Yes.

    MS: Is the Phase II trial on hold until all of the funding is in place?

    Dr. Sadiq: The trial is not on hold, we are really just starting to think about implementation. We just received FDA approval, and we are going to get another MS center involved, I’m in talks with another MS center here in New York, and then after they’re on board we will get things going. So even if we got all the funding right now, we wouldn’t be able to start the trial until late summer 2016. Right now were planning on starting the trial in July or August 2016.

    MS: Assuming everything goes as planned, and there aren’t any unforeseen problems, how long do you think it would be until the type of treatment you are trialing would reach common clinical practice?

    Dr. Sadiq: It will probably be by the end of the decade, by 2020 I hope if everything goes well.

    MS: Do you think there’s any difference in effectiveness between bone marrow derived and adipose (fat cell) derived stem cells?

    Dr. Sadiq: Well, we’re not sure. We started working with bone marrow derived cells from the beginning, but adipose derived may turn out to be better because adipose tissues contain a greater number of MSCs, so you may be able to get a better harvest. But because the FDA oversees every project from start to finish, and our trials began using bone marrow derived cells, if we started using adipose cells now we have to go back to the drawing board with the FDA. So in order to continue our ongoing trial protocols, since we started with bone marrow derived cells, we will continue using bone marrow derived cells.

    MS: Do you have any thoughts on the clinics that are currently doing mini liposuctions and then re-injecting the cells intravenously the same day or the day after?

    Dr. Sadiq: These clinics are just using the stromal fraction, and nobody really knows what that achieves. This process is really not a stem cell therapy, since the stromal fraction only includes a small number of MSCs. It seems like these clinics just want to make money, there’s no evidence that this method would be effective, at least when dealing with neurodegeneration.

    MS: What other avenues of research are being pursued in the Tisch MS center’s labs that you consider most promising?

    Dr. Sadiq: My goal in life is to find the cause of MS, and that’s really where I concentrate my efforts. I think we have a number of discoveries that are coming together now and I hope that one day soon we will be able to declare that we’ve found the cause of MS.

    We do a lot of work with biomarkers as well. In this Phase II trial we are going to look at all the biomarkers that are associated with clinical response, to be able to identify a marker that will be able to predict which patients have the best chance of responding and seeing benefit, and through what mechanisms they are getting better. This is very important work but it’s not the work that drives me to come into the clinic every day at 4 AM.

    MS: What does drive you to come to work every day at four in the morning?

    Dr. Sadiq: That’s to find the cure to this damned disease.

    MS:

    I can personally attest to Dr. Sadiq’s obsession with finding the cause of and cure for MS. Through the years, Dr. Sadiq and I have developed quite a strong bond, and I know from experience that he can be found hard at work in his clinic and laboratory nearly round the clock, very often at least six days a week. I’ve spoken to Dr. Sadiq via telephone at all hours of the day and night, and have even had office visits with him on the day after Christmas. He once showed up at my bedside at 3 AM when I was hospitalized and suffering miserably from MS related symptoms, to simply be there with me and literally hold my hand. Not your typical doctor, to be sure.

    As Dr. Sadiq makes clear, funding is of the utmost importance in order to get this trial up and running in as timely a fashion as possible. There is a tremendous amount of work to be done, and all donations, no matter how small, will make a difference.

    As a long-suffering MS patient myself, I know that friends and family are often eager for ways to help fight the disease. While there are many worthy MS charities, in my opinion the biggest bang for the MS donation buck can be had by donating to the Tisch MS Research Center of New York. Donations to the Tisch Center will directly serve to hasten the completion of these stem cell trials and hopefully bring this exciting technology to MS patients worldwide. Please pass the word along, and (click here) to donate.

    A big thank you to all who participate in and contribute to this project, and to all the Wheelchair Kamikaze readers that have made their voices heard at the NMSS in regard to funding the Tisch Center’s efforts. It appears that the MS Society may finally be ready to listen, and hopefully the NMSS will this time come through with funding for this vital research.

    I’ll keep you posted…

    http://www.wheelchairkamikaze.com/20...diq-tisch.html
    Last edited by Sherman Peabody; 10-29-2017 at 04:24 PM.

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    Distinguished Community Member BBS1951's Avatar
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    This may be ready in time for me. I wonder if it will also cure my Stiff Person Syndrome. That would be awesome.

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    Distinguished Community Member Sherman Peabody's Avatar
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    ^^
    Fascinating articles on that here:

    https://www.medscape.com/viewarticle/830695

    http://oirm.ca/oirm-news-events/unlo...ome-stem-cells

    Canada seems really progressive in this.

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  13. #7
    Distinguished Community Member Sherman Peabody's Avatar
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    Stopping Stiff Person Syndrome: Alabama woman turns to stem cell transplant for help

    Experimental Fred Hutch treatment aims to ease symptoms of rare, debilitating condition that causes rigid limbs, searing pain

    By JoNel Aleccia

    A young Alabama woman with a rare disorder that leaves her body literally as stiff as a board is the first Fred Hutchinson Cancer Research Center patient to receive a stem cell transplant in hopes of helping – if not curing – her devastating condition.

    Sallie Rhodes, 26, was diagnosed more than a year ago with Stiff Person Syndrome, or SPS, an oddly named neurological autoimmune disease that strikes about one in every million people worldwide and leaves some sufferers so rigid they can’t walk or move on their own.

    It’s a bizarre disease in which severe muscle contractions can be triggered by loud noises or sudden scares, sending victims crashing to the ground, unable to break the fall. Rhodes has suffered concussions, cuts and other injuries after what she calls “lock-ups” – searing spasms that make her legs stiff, her head and neck rigid, the muscles in her torso so tense she can barely breathe.

    “I just get totally locked,” said Rhodes, who lives in Montgomery, Alabama. “My dad and brother will pick me up by my ankles and shoulders and I’m like a board. They’ll pick me up to put me on the bed and I don’t sag like a normal person would.”

    Rhodes has been sick for more than two years with symptoms that stumped doctors who originally suspected ailments ranging from meningitis to Rocky Mountain spotted fever. Before that, she was a normal, happy young woman with an apartment, roommates, a passion for jogging and a good job as a pediatric nurse. But she contracted a severe and unexplained virus at age 24 and hasn’t been the same since.

    “Basically, my life has been turned upside down,” said Rhodes, who now lives with her parents and can’t be left alone. “I’ve missed out on a whole lot of things. I’ve missed out on weddings, events with friends. I’ve definitely lost friends, lost my job, lost so much.”

    SPS typically strikes in adulthood at an average age of 40, though it’s been known to occur in people from their mid-20s to late 50s. Treatment for SPS consists mostly of massive amounts of muscle relaxers, pain relievers, and anti-anxiety and anti-seizure drugs. Rhodes also was treated for several months with plasma exchange, or PLEX, a process of replacing plasma in the blood with protein fluid.

    But nothing helped for long and Sallie Rhodes’ condition continued to deteriorate. Desperate for answers, her mother, Carrie Rhodes, 55, started researching other potential treatment options for SPS.

    She learned that some SPS patients benefitted from stem cell treatments that used high-dose chemotherapy and implants of the patients’ own cells to reboot their immune systems and reverse the worst symptoms of the disease.

    Such transplants have been used in just a few patients, including two women in Ottawa, Canada, with severe SPS whose cases were chronicled in a recent issue of JAMA Neurology. Those women are both in clinical remission now, back to work – even skiing – at more than two and four years after their transplants.

    But the treatment is still highly experimental – and typically not covered by health insurance. In Sallie Rhodes’ case, her policy said specifically that stem cell transplants for autoimmune conditions weren’t included. However, officials with Blue Cross and Blue Shield of Alabama made an exception and approved the procedure.

    Bernie McLaughlin, a nurse with the Fred Hutch program, said several other SPS patients are good candidates for transplants in Seattle, but they face roadblocks from insurers who won’t pay for the procedures.

    “We are happy we had the option to do it,” Carrie Rhodes said. “Otherwise we would have had to show up in Seattle with $450,000.”

    "The family had settled on Fred Hutch because of the center’s vast experience founding and performing bone marrow transplants," Carrie Rhodes said. They applied for – and were accepted into – an ongoing clinical trial testing the efficacy of the transplants in people diagnosed with more than a dozen neurological autoimmune diseases that did not respond to conventional therapy.

    In May, the Rhodes family loaded into a medical motor home – Sallie’s condition prevents her from flying – and drove 2,600 miles from Montgomery to Seattle for a three-month stint as the first SPS patient to receive an autologous hematopoietic stem cell transplant, or auto-HSCT, at Fred Hutch. Everyone was anxious and excited, including not only Sallie and her mom, but dad Spears Rhodes, 55, and her 22-year-old brother, also named Spears.

    The auto-HSCT study is led by Dr. George Georges, a Fred Hutch physician who is using the procedure to treat patients with rare or recalcitrant diseases who’ve exhausted other options.

    In Rhodes’ case, the idea was that the transplant could disrupt SPS, which seems to be linked to high levels of an antibody that attacks glutamic acid decarboxylase, or GAD, an enzyme involved in the synthesis of gamma-aminobutyric acid, or GABA, which is directly responsible for regulation of muscle tone.

    “The antibody to the GABA-ergic neurons probably interferes with the normal process of muscle relaxation after contraction,” explained Georges. In other words, the muscles stay painfully rigid.

    Georges cautioned that even among SPS patients, Rhodes’ symptoms were very severe.

    “She was so disabled,” he said. “This patient was more stiff and more debilitated than the patients in Ottawa.”

    Simply getting through the mechanics of the May 5 transplant was a challenge, Georges said. Doctors were worried that Rhodes’ condition was so severe that muscle spasms could stop her breathing, or that she’d be nauseous from chemotherapy and unable to keep from choking on her own vomit.

    But the transplant performed at the University of Washington Medical Center, with follow-up at Seattle Cancer Care Alliance, was a success.

    Upper-body motion is much improved

    More than five months later, Rhodes’ SPS symptoms are much better, both she and Georges agree. Her upper-body motion is much improved, and her spasms are less frequent and severe when they do occur.

    “She’s done incredibly well, better than I thought she would,” Georges said.

    But Rhodes and her family say the improvement hasn’t been quite as dramatic as they anticipated. She’s never entirely stopped having spasms, including episodes severe enough to send her regularly to the emergency room.

    “They had told me it was totally experimental. It may get better, it may not get better, who knows?” Rhodes recalled.

    Additional plasma exchange has helped, likely by removing the anti-GAD antibodies from her blood. But the effects last for just weeks, at most, and the procedures are invasive, expensive – and not covered by Rhodes’ health insurance.

    Just this month, Rhodes underwent surgery to remove her thymus, an organ that loses most of its function by adolescence but sometimes regrows in adults treated with chemotherapy. The surgery went well, but afterward, Rhodes’ father accidentally bumped some medical equipment, causing it to crash noisily to the floor.

    "Within minutes, Sallie Rhodes was in full spasm – and she’s had several more episodes since," Carries Rhodes said.

    Mother and daughter both admit they’re disappointed that Sallie’s condition hasn’t improved faster.

    “I just went through this treatment and I wanted to see some sort of positive effect,” Sallie Rhodes said. “I did, my upper body has changed fantastically. But I was discouraged. I was disappointed because I’m so debilitated by this condition.”

    Georges said he understands and feels compassion for the family’s reaction. With such an experimental therapy, it can take time for full improvements to take effect. In the Ottawa cases, the patients improved gradually over a period of three years after their transplants.

    That’s mostly because it takes time for the antibody to leave the system, he added.

    “She has experienced some improvement and we anticipate – we hope – that she will experience further improvement, reduction in SPS symptoms over the next two to three years,” he said.

    For now, that leaves Sallie Rhodes and her family to cope daily with the demands of the devastating disease. She said she wants to increase awareness about Stiff Person Syndrome in hopes of raising money that could lead to research-based cures.

    In the meantime, Rhodes said she’s relying on her Christian faith to glean a larger lesson from her sudden and bizarre illness.

    “I see the amount of people lifting me up in prayer and supporting me,” she said. “I’ve gained strength in the Lord and an entirely new outlook on life.”

    https://www.fredhutch.org/en/news/ce...ransplant.html
    Last edited by Sherman Peabody; 10-29-2017 at 04:20 PM.

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    Thank you SP. at least someone is doing research on SPS!

    The Ottawa woman piques my curiosity. It’s a grueling treatment, I wonder the mortality rate from the treatment.
    Last edited by BBS1951; 10-30-2017 at 01:34 AM.

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