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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    How prevalent to others with MS is burning mouth syndrome, where your tongue hurts constantly?

    The pain is also in the roof of my mouth a lot of the time, my mouth often feels dry, and I feel the urge to spit occasionally. One website says maybe I'm perimenopausal :(
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    Does MS cause scalp pain and tenderness in the middle of scalp along with sensation of something is crawling inside of head?

    I have a sore tender spot at the top of my head. I have been living with this for a few years, It is very sore when you touch it. I have check the area and there is no irritation. It is just very uncomfortable. I cannot let anything touch that area. Also, when I bend down I feel a sensation like something is crawling in certain part of the head. I have to rub the area to make it stop.
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    Can MS cause hallucinations?

    I would also like to know what medication will work on these hallucinations.
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    What is the best treatment for MS patients who experience nighttime foot-twitching?

    Several times a night I am awakened by twitching of either foot. I have ben prescribed 200-300 MG of gabapentin to be taken at bedtime, but it is really hit or miss. Sometimes it works, many time t doesn't. The only thing that seems to help is to get out of the bed and stand up for at least 3 minutes, which seems to "break the cycle" of the twitching. Are there any other proven therapies?
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    Is there any research specific to trigeminal neuralgia ongoing or being considered? What meds seem best for the condition?

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    What causes MS-related fatigue to be so severe that it affects thinking, coordination, speech, and even the ability to sleep?

    Fatigue messes with my whole life. I am not able to stay awake but I am also not able to sleep. I feel like I am in the constant state of grogginess. I have poor thought processing, memory, word recall, and coordination. I barely leave the house because I look like I’m on drugs when I go out in public. Anytime I get the least bit still I fall into the half awake half asleep state I live in because I can’t sleep and I can’t stay awake. I take pills to stay awake and pills to sleep and neither one of them work! I am at a loss as to what to do.
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    Could skin conditions/allergies, eg urticaria, be a symptom and possibly part of the Prodrome of MS?

    I and many people I know experienced chronic skin conditions such as urticaria (in my case brought about by heat or cold including exercise induced body temperature increase) long prior to being diagnosed. in my case this intermittent urticaria lasted about 3 years and then stopped and has never recurred. Should unexplained urticaria be a trigger for medical practitioners to be alerted to look for MS
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    Could MS symptoms be managed through hormone replacement, adjustment, or augmentation?

    Could hormone-based therapy also protect against MS exacerbations and disease progression?
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    Are MS symptoms linked to specific lesion locations, and could these links be identified through a comprehensive database of MS MRI images?

    I've asked my doctor for information on the effects of the placements within my brain of certain lesions. There is currently no real knowledge base to say that a lesion in a certain spot could cause symptom A or symptom B. If there were enough scans with corresponding patient symptoms I believe we could start seeing patterns and relationships between damaged locations and symptoms. We could start to understand the disease from a statistical point of view we haven't had before. Considering we have the ability to share all of this information digitally today it would be relatively simple to put a database together amongst the largest healthcare organizations specializing in MS.
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    Can right hip flexor problems caused by MS be helped with physical therapy?

    Hip flexor problems as hip locking in place like frozen shoulder does
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    Do diets or supplements aimed at improving mitochondrial health have the potential to help with MS fatigue?

    It always seems that tsunami fatigue was due to mitochondrial collapse.
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    How effective are treatment options for tremor in managing MS-related hand tremors?

    I'm right-handed but find my right hand is almost useless because it shakes so much when I try to use it.
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    Does engaging in creative activities, such as art, music, or writing help manage MS symptoms and improve overall wellness?

    There has been some research in this area, particularly in specific fields such as how does journaling help with chronic conditions/MS? Art therapy is another field that has been proven to aid in many conditions, particularly in the mental health area (this is just my supposition here). In any case, I would posit that creativity in regard to MS specifically could be explored as a way to enhance quality of life. Here are a few examples based on an AI search in CoPilot: 1. Stress Reduction: Creative activities can be a form of relaxation and stress relief, helping to reduce anxiety and improve mood. 2. Cognitive Function: Engaging in creative tasks can stimulate the brain, potentially improving cognitive functions and slowing cognitive decline. 3. Emotional Expression: Creativity provides an outlet for expressing emotions, which can be particularly helpful for those dealing with the emotional challenges of living with MS. 4. Social Connection: Participating in group creative activities can foster a sense of community and support, reducing feelings of isolation. 5. Physical Benefits: Activities like painting or playing a musical instrument can also help with fine motor skills and hand-eye coordination.
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    Does Wellbutrin improve MS fatigue?

    I started taking Wellbutrin for minor depression, and it massively helped my fatigue. I googled for a connection and didn't really find one. Obviously it's not crazy to think the reduction in fatigue is due to treatment of depression, but it's a different mechanism, it could help more people.
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    How effective are available or emerging treatments or medications in treating and preventing vertigo / equilibrium issues in MS?

    I take Meclizine and do PT. It does help somewhat but they do not seem help decrease frequency or severity, plus Meclizine makes me sleepy so can't do anything after I take it. It seems doctors can't offer me much on how to deal with vertigo and equilibrium issues. Other reason for Vertigo / equilibrium issues have been ruled out. I would like to see more treatments options for this issue. It's impossible to do anything when I am dizzy, plus more risk for falls.
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    Why does high temperatures (70 degrees or higher) have a very significant on the physical (and often times mental) functions of a person with MS?

    Heat or outside temperature awareness is a major and daily concern personally.
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    Do Hispanics as a group have different MS symptoms than non-Hispanic people?

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    What are the best alternatives to the EDSS for monitoring disability progression in people with MS whose main impact(s) are not related to walking?

    My primary impacts relate to overall fatigue, upper body weakness and fatigue, and cognitive decline. The EDSS doesn't seem to capture my decline in function and therefore my neurologist is hesitant to identify it as progression. This impacts the potential for treatment identification, if possible
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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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    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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    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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    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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    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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    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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    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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    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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    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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    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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    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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    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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    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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    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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    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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    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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    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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    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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    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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    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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    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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    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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