This Is MS Multiple Sclerosis Knowledge & Support Community

Hi everyone!

My name is Miyabe and I'm a PhD candidate completing the IMPACT fellowship at MIT. My research topic focuses on developing new drug therapies for MS and I really want to touch base with as many patients as possible about their experiences using the current approved drug therapies.

A link to the short survey, ~10 mins, can be found here (http://tinyurl.com/ratemsdrugs). It is anonymous and no response is mandatory (answer as many questions as you feel comfortable). All of the results from this survey will be available immediately here (http://tinyurl.com/msdrugfeedback).

My goal with this survey is to get a grasp on what is and isn't working with the current therapies outside of clinical trial populations. This will help us to guide research in the best possible direction for patients. If there's any question that seems like it's phrased incorrectly or if you think there's a question missing, please feel free to email me or respond to this post and I'll do my best to add it!

Hi Miyabe,

Firstly, well done for trying this approach. However, I think your questions will not draw a big response. Most people on this site are here because they have an underlying level of dissatisfaction with their treatment or progression. Over and over the same questions about which drug to use, if any, arise. We seem to fall into groups; those where the doctor gives the patient no choice, those where the patient seems to pick (like they are at a lolly shop) and those who steer away from the DMDs. Some of us have tried the DMDs and been dissatisfied and gone on to other things. Some of us get reasonable advice at different levels and very odd advice at others. Almost consistently we are labelled as having MS and its incurable so "do what you're told". There is very little advice about dealing with symptoms such as fatigue, muscle tightness, muscle weakness, bowel disorders, gut problems, mood issues, etc. There is almost no conversation about metabolic issues such as vasoldilation, energy pools like ATP or managing spasticity or edema. So we resort to each other.

The problem with your survey it has underlying assumption that we are happy with the advice we get when I don't think that is actually the case. There were some recent studies in the UK where only a low proportion of GPs were comfortable giving advice on neurological issues. I think you will find that is a global phenomenon and as patients we are on the receiving end. In a sense, you are asking us to fit into the box that we are trying to jump out of.
You would probably get a better response if you were asking us how confident we are that the prescribing doctor a) knew why the medication was prescribed, b) how they reacted when we we said we were dissatisfied, c) how long we stay with a particular practitioner,d) how many different practitioners we see (me- cardiologist, neurologist, GP, spasticity clinic,pilates instructor) and who makes the most difference.
Your questionnaire is linear but managing MS is not like that. It is a web of strands that don't always obviously connect. The test for efficacy with a lot of these medications are not what healthy people would consider great outcomes. That is why we are here, to augment our knowledge, to argue our cases and to learn from each other.
Regards,