Published
By Caroline Wyatt
BBC News
"I was playing a game of ultimate frisbee and got fuzzy vision in one eye - a bit like looking through a steamed-up windscreen."
Ailsa Guidi was 22 at the time, studying at University of Manchester.
"The doctor said it was optic neuritis, so I had steroid treatment, and the blurring went away. So I got on with being a student."
Two years later, in 1999, her vision went fuzzy again. This time, her GP was concerned that it might indicate something more serious.
On a Friday evening, Ailsa went alone for her first MRI brain scan with the neurologist who would give her a life-changing diagnosis.
"He told me: 'you've got very mild multiple sclerosis'. At the time I knew some people who had MS and needed to use a wheelchair. My eyes filled up with tears and the neurologist asked me 'why are you crying? I've just told you it's very mild'," Ailsa remembers.
"But I was 24, all my friends were meeting up at the pub that evening, and so for me, it was a really big thing to take in. Even if having milder MS was good, as the neurologist saw it, for me being diagnosed with MS was not."
Ailsa began treatment, and tried not to let the diagnosis change her life too much.
"At the time, I found it quite hard to talk to friends about it because they were either so worried about me that I ended up telling them I was totally fine, or they just didn't know very much about MS," Ailsa recalls.
She saw in the millennium in Barcelona with her boyfriend Robert, who was studying at the same university. Later they married, and in 2005 had their first child.
Image source, Ailsa Guidi
MS is a neurodegenerative disease, in which the immune system mistakenly attacks the fatty myelin sheath that protects the nerves in a similar way to insulation around electric wires. As that protection is gnawed away, the nerves can eventually stop being able to send the signals that help us to walk, talk, think clearly or use our hands normally.
'A major moment in MS research'
Ailsa, now 47, is taking part in a groundbreaking new trial, which is looking into whether existing drugs can be repurposed to help slow MS progression.
The way it is designed means several drugs can be tried at the same time, and more can be added or dropped as results emerge.
The Octopus trial - so-called because it is a multi-arm, multi-stage trial - is being run by Prof Jeremy Chataway, from the National Hospital for Neurology and Neurosurgery UCLH in London, with £13m in funding from the UK's MS Society.
A similar trial design has been used to test drugs for prostate cancer and Covid.
Existing trial patients who prove to be on ineffective drugs can swap to a new arm, and are allowed to continue any other MS disease-modifying drugs they may already be taking.
The first two trial medications are high-dose metformin - a diabetes drug that may help regenerate myelin - and a version of high-dose alpha-lipoic acid, which is a food supplement that acts as an anti-oxidant. It has already been approved in Germany for treating neuropathy - weakness, pain, numbness or tingling in damaged nerves.
The trial team spent several years whittling down 100 potential drugs, and will add more as other strong contenders emerge.
"We are at the start of a long journey," says Prof Chataway. "There are now many treatments for relapsing-remitting MS, but far less available for progressive MS. This trial structure is like a machine for testing drugs for progressive MS. We hope to make it an everlasting machine - at least until we have achieved what we want in controlling and ultimately reversing progression in this difficult stage of MS."
He thinks MS patients should eventually be able to take disease-modifying drugs to deal with the inflammatory component of MS and add on any remyelinating drugs that prove to help repair or even stop nerve damage.
"This is a major moment in MS research," Prof Chataway believes. "Octopus has the potential to change the clinical trials landscape around the world, and we won't stop until we have the treatments that transform the lives of everyone with MS."
The first 375 patients are already being recruited for stage one of the trial, with stage two due to bring the total up to about 1,000.
This month, Ailsa became one of the first people to be accepted on to the trial, which is aiming to recruit at another 30 centres around the UK as they are approved.
After a brain scan, blood tests and a thorough neurological examination, she has now received her first dose of trial medication.
Ailsa knows that she may be on the placebo arm getting no real treatment, but she hopes the Octopus trial will help doctors find ways of slowing or halting MS progression, and perhaps even repair some of the damage.
"I've got difficulties walking but I can live with that. I just don't want to get any worse."
'Biggest impact is what MS takes away from you'
Ailsa took medical retirement at 33 when it became clear that she could not manage her MS fatigue while working and taking care of their three children while Robert was working full-time.
Robert, also 47, says MS has had a more noticeable impact on them as a family as the illness has progressed.
"At the beginning, things were fairly normal. But now we have to plan a bit more, and take the right equipment. It limits the scope of what you can do, so sport or dancing aren't options any more. The biggest impact is the things that MS takes away from you," he says.
"Ailsa and I are a very close partnership and I think we're both positive people. Everyone has their own struggles in life, so you've just got to get on with it and enjoy life as much as you can."
Why the immune system goes rogue in this way for about three million people worldwide has long been debated. A Harvard University study in 2022 showed compelling evidence that the Epstein-Barr virus that causes glandular fever triggers the process. More research is taking place in the hope that one day, MS can be prevented.
As Ailsa's symptoms progressed, she went from using a single stick or crutch for balance, to a walker, and now a wheelchair, trike or mobility scooter for longer distances, such as when walking the family labrador with Rob or the children.
"I think it's important to be really open with the children, so they understand MS and the impact in their own way," she says.
"And obviously the impact changes. When the children were small, they understood that it may mean you can't join in the mums' race at school, or you might have to do it on your trike. And as the children grow older, they might have to help push my wheelchair when I take them shopping."
In February 2022, Ailsa was given the unwelcome news that she had gone from having relapsing-remitting MS, in which symptoms often improve after a relapse, to having secondary progressive MS, when symptoms no longer clear up after years of cumulative nerve damage.
About 130,000 people in the UK live with MS, and of those, tens of thousands - like Ailsa and me - live with a progressive form of the disease.
Under the current National Institute for Health and Care Excellence guidelines, only two drugs - Siponimod and Extavia - are approved for secondary progressive MS, and not everyone will qualify for them.
Ailsa discovered this spring that she does not meet the criteria for Siponimod.
"That was a new thing to deal with, because facing progressive MS feels quite different when you run out of disease-modifying drug options. It means that your life has changed in quite significant ways."
'Ability to revolutionise treatment'
Dr Emma Gray, assistant director of research at the MS Society, says the Octopus trial should significantly speed up how quickly treatments can be tested.
"We wanted the trial to be as inclusive as we could, including people up to the age of 70 and those who can't walk, because we often hear from people with more advanced MS that they can't access other studies. My hope is that with Octopus, we have created a world-first platform trial that has the ability to revolutionise the treatment of people with progressive forms of MS - and that this really does change the landscape for MS for good."
For people like Ailsa - and me - with more advanced MS, this trial does offer hope.
I am currently on the same hospital's MS-STAT2 simvastatin trial, testing whether a high-dose statin can limit brain atrophy in MS. That trial is now drawing to a close.
If such repurposed drugs are shown to be effective, that could help thousands of people with progressive MS who otherwise risk being told there is nothing more their doctor can do.
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FAQs
'Major moment in MS research' as new Octopus trial starts? ›
Ailsa, now 47, is taking part in a groundbreaking new trial, which is looking into whether existing drugs can be repurposed to help slow MS progression. The way it is designed means several drugs can be tried at the same time, and more can be added or dropped as results emerge.
What are the new treatments for MS in 2023? ›Mesenchymal stem cell therapy (MSCT) aims to prevent relapses and new MRI lesions and improve disability without invasive cytotoxic immunosuppression therapy (Chemotherapy). MSCT can reduce inflammation and regulate the immune system, which is vital in helping improve MS symptoms and promote disease remission.
Will there be a cure for MS soon? ›How Close Are We to a Cure for Multiple Sclerosis? New disease-modifying therapies for multiple sclerosis can help slow disease progression. Some experimental therapies may show promise in treating the disease. There's currently no cure for multiple sclerosis (MS), but treatment can help manage it.
What is the Octopus trial for MS? ›The Octopus trial is taking a new approach to testing repurposed treatments (ie treatments already in use for other conditions) which have shown potential to protect nerves in laboratory studies. Octopus is designed to be a more efficient kind of clinical trial by using the multi-arm, multi-stage (MAMS) approach.
What research is being done on MS? ›Investigators are using MRI to study the natural history of MS and to help define the mechanism of action and cause of side effects of disease modifying therapies.
What is the new drug for secondary progressive MS? ›Siponimod, which is taken as a daily tablet, is the first new treatment for secondary progressive MS in over a decade. The only other available treatment for active secondary progressive MS is injected, and siponimod has been shown to be more effective at reducing relapses and delaying cognitive impairment.
What is the new MS treatment stem cell? ›HSCT (haematopoietic stem cell transplantation) is an intense chemotherapy treatment for MS. It aims to 'reset' the immune system by wiping it out and then regrowing it, using your stem cells.
What is the most recent treatment for multiple sclerosis? ›Ocrelizumab (Ocrevus).
This humanized monoclonal antibody medication is the only DMT approved by the FDA to treat both the relapse-remitting and primary-progressive forms of MS . Clinical trials showed that it reduced relapse rate in relapsing disease and slowed worsening of disability in both forms of the disease.
Diphenhydramine, sold as Benadryl, is a type of antihistamine that can help reduce the likelihood or severity of an allergic reaction to a multiple sclerosis (MS) infusion treatment. Antihistamines block histamines, chemicals made by white blood cells that cause allergy symptoms such as itchy skin, rash, and hives.
Can MS go into remission for 20 years? ›Periods between attacks are known as periods of remission. These can last for years at a time. After many years (usually decades), many, but not all, people with relapsing remitting MS go on to develop secondary progressive MS. In this type of MS, symptoms gradually worsen over time without obvious attacks.
Has anyone ever been healed from MS? ›
Although there is no cure for MS, we can see a future where people can live free from its effects and not worry about their MS getting worse. There are now a number of health conditions - like rheumatoid arthritis or Type 1 diabetes – where there are no cures.
What is the new MS drug that repairs myelin? ›The two had discovered in the lab that the medication clemastine – originally approved as an antihistamine – could repair myelin, the protective insulation around nerve fibers that is damaged in MS.
Can metformin and clemastine repair myelin in people with MS? ›Metformin can also help to repair myelin. In MS, cells of the brain and spinal cord don't repair myelin as well as they should. Researchers think in MS the special myelin-making cells are slower to develop the necessary properties to repair.
What medication is Jack Osbourne on for MS? ›Six weeks after his diagnosis, after reading about the disease and exploring his treatment options, Osbourne decided to start nightly glatiramer acetate (Copaxone) injections.
Where is the best place for MS treatment? ›Mayo Clinic's MS program has earned a national reputation as a top diagnostic and treatment center. The program is recognized for its multidisciplinary approach to patient care as well as for its advanced research into improved medications and other treatments.
What new study reveals surprising cause of multiple sclerosis? ›“Our data strongly suggest Epstein-Barr virus is the leading cause of multiple sclerosis,” said Kjetil Bjornevik, a research scientist at Harvard and the study's lead author. “It was a really dramatic increase in risk that would be very hard to explain any other way.”
Is there anything that can reverse MS? ›“Many drugs substantially decrease progression of MS, but don't reverse the course of the disease,” says Seema K. Tiwari-Woodruff, PhD, professor of biomedical sciences in the School of Medicine at the University of California, Riverside. For that, she says, drugs that protect or regrow myelin are needed.
What is the life expectancy of someone with MS secondary progressive? ›So it's important to keep as well as possible and seek treatment promptly when needed. Most people with MS live into old age, although lifespan, on average, is about six years less than the general population.
Can secondary progressive MS go into remission? ›Can remission occur with SPMS? If you have SPMS, you probably won't go through periods of complete remission when all of the symptoms go away. But you may go through periods when the disease is more or less active. When SPMS is more active with progression, symptoms get worse and disability increases.
What is the best medicine for primary progressive multiple sclerosis? ›Ocrelizumab is FDA-approved to treat both PPMS and RRMS. It's a monoclonal antibody that destroys certain B cells of the immune system. Research suggests that B cells are partially responsible for damage to the brain and spinal cord tissues of people with MS. This damage is enabled by the immune system itself.
What is the best stem cell treatment for MS in the world? ›
Though different types of stem cells are being researched in MS, only autologous hematopoietic stem cell transplant (aHSCT) has been recommended by the National MS Society as a safe and effective treatment for some people with relapsing-remitting MS outside of clinical trials. Read more about aHSCT in MS.
Can stem cells cure multiple sclerosis? ›Stem cells are unlikely to cure multiple sclerosis but in the future may be able to slow, stop or even reverse the progress of the disease. However, much more research is needed to establish whether the different sorts of stem cells can provide safe and effective treatments for MS, and how those cells should be used.
What actress has MS stem cell treatment? ›In Aug. 2021, Blair revealed that her MS was in remission following a type of therapy known as hematopoietic stem-cell transplantation.
What is the safest MS drug? ›Research indicates they can have life threatening side effects. In contrast, multiple sclerosis medications with the safest profile are interferon-β preparations, such as Avonex, and glatiramer acetate (Copaxone).
Is coffee OK for MS? ›In conclusion, it appears that drinking a moderate amount of caffeine shouldn't have any ill-effect on people with MS. However it is up to you whether you choose to consume caffeine depending on whether you enjoy it and how it affects you. So you can keep enjoying your almond milk latte or morning espresso.
What vitamins should you not take with MS? ›High doses of other vitamins can antagonize your immune-modulating, immunosuppressive therapies used to manage MS. Supplements that stimulate the immune system should be avoided in high doses. Those include selenium, zinc, B1, B2, folic acid, B6, vitamin A, biotin, magnesium, copper, and manganese.
What multiple sclerosis need to avoid? ›It's recommended that people with MS avoid certain foods, including processed meats, refined carbs, junk foods, trans fats, and sugar-sweetened beverages. Other tips to manage MS symptoms include: making meals in bulk.
Is walking good for multiple sclerosis? ›The endorphins released in your body when you walk help lift your mood. Balance and coordination improves with repeated walking. The less weight you carry around, the less strain on the legs and the better balance you have.
What is the average age of death for someone with MS? ›The study found that people with MS lived to be 75.9 years old, on average, compared to 83.4 years old for those without. That 7.5-year difference is similar to what other researchers have found recently.
What is the most common cause of death in MS patients? ›Pulmonary complications.
MS can weaken the muscles that control the lungs. Such respiratory issues are the major cause of sickness and death in people in the final stages of MS.
What autoimmune disease mimics MS? ›
Sjogren's syndrome is an autoimmune disease that can mimic some of the symptoms of MS such as fatigue and joint pain.
Does collagen help multiple sclerosis? ›Some people have shared anecdotal experiences of an improvement of their MS symptoms with collagen supplements, but early research has not proven the benefit or supported the use of collagen for MS.
How to reverse MS with diet? ›The Overcoming MS diet
The OMS diet recommendations are similar to the Swank diet. It advises cutting out dairy and meat, and eating less fat – particularly saturated fat. It also recommends flaxseed oil as an omega 3 supplement and vitamin D supplements if you don't get out in the sun much.
Ponesimod (Ponvory) was approved by the FDA in 2021 and is taken once a day with a gradually increasing dosing schedule. This medicine has a low relapse rate and has demonstrated fewer brain lesions than some other medicines used to treat multiple sclerosis.
Does B12 repair myelin sheath? ›You need vitamin B12 to help maintain your nerves' myelin sheath. If you are deficient in vitamin B12 you can get symptoms that are similar to some of the symptoms of MS, such as fatigue, weakness, numbness or tingling and problems with memory.
What is the best supplement for myelin repair? ›B Vitamins and Methylation
A number of different B vitamins can increase myelin and help your body regenerate myelin. Vitamin B12 plays a key role in the generation and function of myelin. Researchers have found that low vitamin B12 levels are significantly associated with myelin degeneration (66, 68).
The myelin sheath is mostly made of fat, but certain fats work better as building materials. Healthy fats can help grease the gears. Unsaturated fats found in foods like nuts, seeds, salmon, tuna, avocado, and vegetable oils help nerve cells communicate more quickly.
What antihistamine is good for myelin repair? ›Clemastine (otherwise known as clemastine fumarate) is an over the counter antihistamine. It could reduce immune activity, and may help to promote myelin repair.
Can myelin be restored in MS? ›Myelin is repaired or replaced by special cells in the brain called oligodendrocytes. These cells are made from a type of stem cell found in the brain, called oligodendrocyte precursor cells (OPCs). And then the damage can be repaired.
Can you live with MS without medication? ›A small number of people with MS have only mild disease and do well without treatment. But many get worse over time. Medicines can reduce the severity of attacks of relapsing-remitting MS and how often you have them.
Is there a cure coming soon for MS? ›
How Close Are We to a Cure for Multiple Sclerosis? New disease-modifying therapies for multiple sclerosis can help slow disease progression. Some experimental therapies may show promise in treating the disease. There's currently no cure for multiple sclerosis (MS), but treatment can help manage it.
What medication is used for multiple sclerosis walking? ›Fampridine (Fampyra) for MS
Fampridine, also known as Fampyra (and in America as Ampyra), is a drug that can help with walking. It helps about one in three people who take it. If this drug works for you it can speed up your walking by about 25%.
— Medical experts along with Sen. Chuck Schumer are pushing to get to the bottom of a new study that says Central New York has the highest rate of multiple sclerosis, or MS, across the country. MS is a potentially disabling disease of the brain and spinal cord.
What country has the lowest rate of MS? ›Studies show that certain ethnic groups have a markedly lower prevalence of multiple sclerosis, despite living in countries where MS is common. For instance, the Sami or Lapps of northern Scandinavia and the Inuits in Canada have very low rates of MS. A similar pattern is observed amongst the Maoris of New Zealand.
What is the best climate for multiple sclerosis? ›For a majority of people with MS, living in temperate climates without extreme hot or cold temperatures may be preferable. Multiple sclerosis (MS) is a neurological condition that causes pain, blurred vision, and a lack of muscle coordination.
What is the root cause for MS? ›The cause of multiple sclerosis is unknown. It's considered an immune mediated disease in which the body's immune system attacks its own tissues. In the case of MS , this immune system malfunction destroys the fatty substance that coats and protects nerve fibers in the brain and spinal cord (myelin).
What is the root cause of multiple sclerosis? ›Multiple sclerosis is caused by your immune system mistakenly attacking the brain and nerves. It's not clear why this happens but it may be a combination of genetic and environmental factors.
What virus is suspected of causing MS? ›Current or previous smokers with the highest levels of EBV antibodies were 70 percent more likely to develop MS than those with neither risk factor. Study Provides Strongest Evidence Yet for the Role of Epstein-Barr Virus in Triggering Multiple Sclerosis. Ask an MS Expert: The Role of Epstein-Barr Virus in MS.
Can vitamin D reverse MS? ›People who have MS and take vitamin D supplements may have symptoms that aren't as bad as they would be if they didn't take vitamin D. Also, symptoms may occur less often, which may improve quality of life. Taking vitamin D also may lower the risk of relapse and may decrease new scarring in the nervous system.
Is MS inherited from mother or father? ›MS is not directly inherited from parent to child. There's no single gene that causes it. Over 200 genes might affect your chances of getting MS.
Can you have mild MS all your life? ›
Multiple sclerosis (MS) is a condition that can affect the brain and spinal cord, causing a wide range of potential symptoms, including problems with vision, arm or leg movement, sensation or balance. It's a lifelong condition that can sometimes cause serious disability, although it can occasionally be mild.
What percentage of MS patients end up in a wheelchair? ›MS does affect gait, mobility, muscle strength, and flexibility, but not for everyone. Research shows that only one in three people with MS use wheelchairs two decades following diagnosis.
What is the life expectancy of someone with secondary progressive multiple sclerosis? ›Multiple sclerosis life expectancy is difficult to determine because it varies from patient to patient, but the average lifespan is usually 25-35 years after the diagnosis.
What is the newest treatment for progressive MS? ›The Food and Drug Administration (FDA) approved a phase 3 clinical trial (NCT05441488) for masitinib (AB Science; Paris, France) as a potential treatment for progressive forms of multiple sclerosis (MS), including primary progressive MS and nonactive secondary progressive MS.
What is the latest treatment for primary progressive multiple sclerosis? ›One medication -- Ocrevus® (ocrelizumab) -- has been approved by the U.S. Food and Drug Administration (FDA) for the treatment of primary-progressive MS (PPMS) as well as for relapsing forms of MS, which include clinically isolated syndrome, relapsing-remitting disease (RRMS) and active secondary progressive disease ( ...
Will MS go into remission? ›MS involves relapse and remission
A remission can last for weeks, months, or, in some cases, years. But remission doesn't mean you no longer have MS. MS medications can help reduce the chances of developing new symptoms, but you still have MS. Symptoms will likely return at some point.
In an analysis of multiple sclerosis registers from two different countries, researchers reported that Sweden's trend toward starting with a highly effective disease-modifying therapy was associated with less worsening disability among patients when compared with those in Denmark, where the general tendency is to use ...
Can MS go away naturally? ›There is no cure for multiple sclerosis (MS), but natural treatments such as adopting a healthful lifestyle and diet, can help to manage symptoms. Multiple sclerosis (MS) is a chronic, progressive disease that causes the immune system to attack myelin.
What triggers MS relapse? ›MS relapses are caused when your immune system attacks the protective covering (called myelin) around nerves in your brain and spinal cord. These attacks damage the myelin. Inflammation around the nerves is the sign of an attack.
What is the best hospital in the US for multiple sclerosis? ›Mayo Clinic's MS program has earned a national reputation as a top diagnostic and treatment center. The program is recognized for its multidisciplinary approach to patient care as well as for its advanced research into improved medications and other treatments.
Which state has the highest rate of MS? ›
According to a nationwide study, Syracuse has the highest rate of multiple sclerosis in the country. The study, from the BlueCross/BlueShield Association, looked at medical claims from more than 41 million people across the country. In New York State, 31 out of every 10,000 have MS.
What state has the most MS patients? ›— Medical experts along with Sen. Chuck Schumer are pushing to get to the bottom of a new study that says Central New York has the highest rate of multiple sclerosis, or MS, across the country.
What is the best vitamin for MS? ›Vitamins that seem of particular interest to people with MS include vitamin D, the antioxidant vitamins, vitamin B6 and vitamin B12. Vitamin D Vitamin D is a hormone, or chemical messenger, in the body.
Can MS be reversed with vitamin D? ›People who have MS and take vitamin D supplements may have symptoms that aren't as bad as they would be if they didn't take vitamin D. Also, symptoms may occur less often, which may improve quality of life. Taking vitamin D also may lower the risk of relapse and may decrease new scarring in the nervous system.
What vitamins should you avoid with MS? ›High doses of other vitamins can antagonize your immune-modulating, immunosuppressive therapies used to manage MS. Supplements that stimulate the immune system should be avoided in high doses. Those include selenium, zinc, B1, B2, folic acid, B6, vitamin A, biotin, magnesium, copper, and manganese.