Research Ideas

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

I think the use of anti-inflammatory diet are very helpful. I’ve been using it for about six years very successfully.

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.

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?

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?

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

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!

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.

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