Research Ideas

These research questions have been driven by iConquerMS participants as part of the Our Questions Have Power program. iConquerMS participants can vote or comment on the questions they most want to see answered by research.

Please use the Category, Stage, Priority and Sort by filters to find the questions that are of most interest to you and vote or comment on those questions. Your votes and comments will determine the priorities for advancing the questions to co-created studies with MS researchers.

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    Does using Paxlovid to treat Covid help to calm MS inflammation?

    I have RRMS and been struggling for quite some time with horrible brain fog, fatigue, weakness but after Paxlovid and after recovery from Covid I noticed my legs feel different and can take steps out of wheelchair, and having better days as good as can be for homebound patient
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    iConquerMS

    Have there been positive results when using Modafinil off label to manage MS Fatigue?

    My doctor recently started me on Modafinil as an off-label drug to help my MS fatigue and it's working for me amazingly well and has made such a difference in my quality of life. I'm wondering if any studies have been conducted around this or could be conducted to see if other users have the same experience.
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    iConquerMS

    What percentage of MS doctors routinely check for latent viral reactivation in addition to bacterial infections when assessing patients whose symptoms are progressing? What factors influence doctors to perform this check or not to perform it?

    Our doctors are quick to rule out bacterial infections as cause of PIRA. No one is checking for EBV, CMV, HHv6 because we progress without symptoms. Grass roots - many of us have a positive EBV early antigen. Test and respond to antivirals. They are the difference between me in a wheelchair and me without assistive devices. As we age, even the typical population has trouble with latent virus. I happen to be AA for that severity gene so perhaps this is why. But it’s a tragedy that neuros and doctors are not checking for this with increasing balance, cognitive and leg weakness difficulties.
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    What are the key deficiencies of knee-ankle-foot orthoses (KAFOs) in terms of comfort and compatibility, and how can advanced design techniques be applied to improving their usability by people with MS?

    I have been searching since 2016. It seems as though the market for KAFO's has not progressed at all in the past decade. If we could inform all universities that offer a Biomedical field of study we need HELP! don't understand? Go to google and search for Images of KAFO's. Great for comic con, bad for humans.
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    What is the effect of Biotin (vitamin B7) on improvements in fatigue for males diagnosed with progressive MS?

    A previous Biotin study on MS ended up producing no statistically significant difference in symptoms compared to placebo. A closer look at the individuals who participated in the Biotin study showed some benefit in terms of a reduction in fatigue by using 100mg of Biotin (vitamin B7) three times daily. Those individuals diagnosed with MS who benefited from Biotin were male and had progressive MS. An updated study on Biotin needs to be conduced using the same dosage amount where the only participants taking part in the updated study are male and have been diagnosed with progressive MS (no RRMS patients).
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    iConquerMS

    Could pelvic floor physical therapy be utilized to treat bladder and/or bowel issues in MS?

    My urologist referred me to a pelvic floor physical therapist and provided samples for me to try after evaluating me and performing a series of tests for nocturia. I have not started the medication yet because if I can eliminate having to ingest another medication, I am all for it. I have started physical therapy and after a couple of sessions, I have noticed that on most nights I am sleeping through the night.
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    Why do your symptoms reduce when pregnant? Is there a treatment that can imitate so symptoms are reduced?

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    Is the Neuro 20 neurostimulator suit helpful for spasticity in MS?

    I'm working with the Neuro 20 group to design a pilot study for their device. Based on the results, we would plan a larger, randomized trial. We are interested in validated outcome measures that are important to MS patients. We could use assistance with study design. Primary endpoint: spasticity/pain from spasticity Secondary endpoints: walking speed, fatigue, VAS, ....mostly TBD as we design the study Timeframe: 8-12 weeks of treatment
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    iConquerMS

    How many people on Tysabri experience a waning effect as they approach their next dose? How much does this effect impact their symptoms and quality of life?

    Even though I receive an infusion every four weeks, I notice that I begin to feel more fatigued several days prior. It can vary from month to month how far in advance the fatigue will begin but it feels as if the medication wears off prior to the time I'm due each month.
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    Do people with primary progressive MS reach a point over time where they stop experiencing new symptoms? If so, in what age range does this typically happen?

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    Is the use of anti-inflammatory diets helpful in stabilizing or reducing MS symptoms?

    I think the use of anti-inflammatory diet are very helpful. I’ve been using it for about six years very successfully.
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    More data/experience on ‘wearing off phenomenon’ with Ocrevus treatment. Can next infusion be administered at 5 months instead of 6 months to avoid this wearing off phenomenon?

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    iConquerMS

    For the 5-25 percent of MS patients who do not experience fatigue as a major symptom, is there a protective factor to be learned? Could we understand why they do not report having the most common symptom?

    Fatigue is the most common symptom of MS and has had considerable impact on our quality of life. Personally, fatigue has impacted my life in more ways than one, as it tends to drive other symptoms such as depression. Studies say that fatigue occurs in 75-95 percent of MS patients. I am intrigued by the 5-25 percent of patients who do not experience fatigue. Are these patients newly diagnosed? Are there MS patients that are later in the disease that truly experience limited to no fatigue? If so, what could be protecting them from this common symptom, and can that help inform better treatment options for those who experience severe fatigue impacting QOL?
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    iConquerMS

    Do some MS patients who are/have taken Ocrevus have advancing disability when compared to other medications. In particular gait and mobility issues.

    I am a retired epidemiologist and thus understand health data analysis pretty well. I pay attention to the qualitative experiences patients report about their disease or treatments. I'm the first person that will warn about drawing conclusions from anecdotal experiences. BUT, once you hear enough experiences with marked similarity and observe that there is even a Facebook group of people who have failed Ocrevus AND experienced advancing disability during their Ocrevus experience - you start to wonder. My hypothesis is that there is a cohort of patients who, for whatever reason, acquire mobility deficients rapidly when on Ocrevus despite minimal lesion development when observed on MRI. I'd suggest an analysis of Ocrevus RRMS patients' EDSS scores over time compared to other patients on other treatments. It might not pan out, but I think there is something going on. Thanks for reading.
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    iConquerMS

    I would like to know whether IV Nutrient Therapy could help manage MS symptoms and prevent future disease activity.

    I’m also wondering about the safety of this therapy and whether there’s a danger from getting too much of a good vitamin?
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    iConquerMS

    How are patients living with both MS and other autoimmune diseases managing symptoms, medications and their medical team?

    I've had MS for 30 years, and psoriatic arthritis for 18 years. It is frustrating managing 1 autoimmune disease, let alone two. medication management is complicated because I can't take 2 biological medications simultaneously. I take a lot of medications, all of which have side effects. It is important that my neurologist and rheumatologist communicate with each other regarding treatment options. I think there is probably a large amount of people with similar situations. Is anyone studying people with MS and other commordidities?
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    MS symptoms vary; does age contribute to symptoms stabilizing and/or decreasing as MS people reach their 70's or older?

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    For those who have urinary incontinence as a symptom can botox be used long term without complications?

    Where are the long term studies. Will I be worse in 20 years if I use botox now or will it simply stop working and return me to my current status?
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    iConquerMS

    Does combining intermittent fasting (IF) with Ocrevus treatment help in reducing MS fog in people with progressive MS?

    I have been on the Ocrevus treatment for several years now and doing an IF dietary regiment where three alternate days per week my caloric intake is under 500 calories. I believe this combination has reduced my MS fog and enabled me to focus better on my work activities, and I would be interested in knowing if it would have the same effect in other people.
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    Can specific ingredients cause MS symptoms to worsen?

    For instance, consuming wheat or sugar can create spasms for me.
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    Other Researchers

    Can anxiety be directly related to MS lesions?

    I have extreme anxiety. One neurologist, mine, said it is because I developed 2 lesions in the mood part of my brain. It came on suddenly and hasn't subsided. When using a forum, a neurologist told me this wasn't possible. I'd like to know if there is a study or relation with lesions causing (severe) anxiety.
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    Can high doses of vitamin D3 (for example, the doses used in the Coimbra protocol) bring about a remission of MS symptoms?

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    How does menopause affect the symptoms of MS? Can symptoms worsen due to menopause/hormonal changes regardless of disease progression?

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    Does mental overload lead to worsening of MS symptoms such as pain and difficulty walking, and if so, what causes this to happen?

    I've noticed that if I am getting mentally drained (even talking with someone for a length of time, say an hour...or that particular person is talking a mile a minute, I get emotionally drained) in which afterward my MS symptoms are off the charts! The ability to walk normally, the pain level is super high, I can't think, my emotions are all over the place (I even cry). I can't be the only one going through this. The more my brain is overloaded the worse I am. This could take as little as 40 mins to 2 hours and then I'm DONE!
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    Does a person with MS have a greater chance of also having Narcolepsy (with/without Cataplexy)?

    I not only have PPMS but also narcolepsy with cataplexy and what started out as Severe Obstructive Sleep Apnea that has gone onto Complex Sleep Apnea (I needed to have a trach tube put in in 2005 that is still in place and will never be removed). While researching all three diseases I found out they are all autoimmune diseases. Besides these I have Fibromyalgia and about 29 or 30 other diagnoses. Some due to the MS but many due to family history and living on a fixed income my whole adult life and not being able to buy the right foods to keep my weight down (and not being able to exercise well). It seems to me that these three diseases must somehow be "related" or affected by each other.
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    iConquerMS

    Is mental health therapy being recommended as a course of therapy for M.S. since M.S. patients have the highest rate of depression and other cognitive issues?

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    Could reactivation of the Epstein Barr virus make MS symptoms worse? Could this not be easily answered?

    Antivirals could be developed to affect the EBV and used for relapses or progression.
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    iConquerMS

    For those taking a B-cell depletion medication such as Ocrevus, are they achieving better results in managing their MS symptoms and slowing progression by combining it with an intermittent-fasting (IF) dietary regiment?

    It has been shown in studies that the microbiome (gut bacteria) is different compared to a normal individual for those patients diagnosed with MS. Can following an intermittent-fasting (IF) dietary regiment where an individual fasts three days per week combined with b-cell depletion such as Ocrevus slow progression of MS even further than b-cell depletion only.
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    iConquerMS

    Is there a correlation or association between MS and Vocal Chord Dysfunction (VCD)?

    I have MS and have also had VCD for the last 6 years. My constant breathing difficulty (choking sensation) with the VCD is much worse than my extremely bad MS. I have tried speech pathology and Botox injections to no avail and wonder whether this is happening due to my lesion in my brain stem.
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    Does night-discomfort or night-stiffness, that may or may not cause you to wake up, increase your core body temperature during that time period?

    Note: This is not a menopausal hot-flash or night-sweatting, UTI, flu, or other current medication side-effect.
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    Why do some people develop speech symptoms as their disease progresses such as stuttering, slurring, and dysarthria?

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    Regarding varying levels of numbness during intercourse for people with MS; What can be done to increase sensations during sexual activity? Are there programs that focus on the mental experience during sex to circumvent the lack of physical feeling?

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    iConquerMS

    When diagnosed with more than one autoimmune disease, what are some ways to distinguish the roots of the symptoms and how to manage them appropriately?

    MS symptoms are often similar to other autoimmune disease symptoms as well as medication side effects. At times it is very difficult to distinguish why a symptom is caused, for example fatigue when having MS, Connected Tissue Disease, Hashimoto's, Depression, and taking Alendronate (Risedronate) for Osteoporosis. The preface of my proposed question is, does it matter what causes it? If it does, how to you deal with the cause and if it continues more than 'normal', what are the best approaches to handle it and who should you reach out to?
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    iConquerMS

    Different people have different symptoms and react differently to different medications. I propose a study to see if different physical therapy (PT) regimens may be more effective that others. For instance, land-based PT, vs pool-based, and even Yoga?

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    iConquerMS

    Why does there seem to be little research and treatment options for dizzyness/lightheaded feelings?

    This is one of my most irritating symptoms and it gets worse the longer I am active. Vertigo medication only seems to help a little if it is very bad. What are the best treatment/management options for dizziness/lightheadedness?
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    What are the best strategies for preventing falls in people with MS based on specific causes, such as dizziness or weakness? Are combinations of some strategies more effective than single strategies alone?

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    What can people with MS following specific diets expect in terms of fatigue improvement, and is this affected by personal characteristics, like age, disability level, or initial fatigue level? Can combining diet with exercise help reduce fatigue further?

    A number of research studies have shown that specific diets or exercise can improve fatigue in people with MS. More evidence is needed that can help to personalize the treatment of fatigue in MS.
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    iConquerMS

    Do people with MS on baclofen experience fatigue worse than those who are not on baclofen? Do people with MS on baclofen experience fatigue worse than people using baclofen for non-MS conditions?

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    iConquerMS

    Are the frequencies and characteristics of “MS Hug” different for people with MS (PwMS) of different characteristics, such as age, sex or disability level? Are some MS Hug treatments more effective than others in specific PwMS?

    I'd also like to know if combinations of treatments are more effective than any single treatment for MS Hug.
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