Research Ideas

I would also like to know what medication will work on these hallucinations.

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?

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

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.

It always seems that tsunami fatigue was due to mitochondrial collapse.

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.

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

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

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.

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).

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.

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?

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

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.

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.

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.

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

Note: This is not a menopausal hot-flash or night-sweatting, UTI, flu, or other current medication side-effect.

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?

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?

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.