Do you want to have a say the contents of clinic speak? #ClinicSpeak #MSBlog
In response to the following question that I received by email I am preparing a series of clinic speak questions.
“It would be really useful for those of us who have been
recently diagnosed to have a clear example to follow with questions for our
neurologists when considering the various treatment options.”
recently diagnosed to have a clear example to follow with questions for our
neurologists when considering the various treatment options.”
From my perspective to make an informed decision you need to ask and
understand the following questions:
understand the following questions:
- Are you sure I have MS?
- What type of MS do I have?
- What prognostic group do I fall
into? - Do I have active MS?
- What is the risk of me not having any
treatment? - Am I eligible for treatment with a
DMT? - What DMTs are available to me?
- What are the pros and cons of these treatments?
I will answer these as best I can over the next few weeks. Please let me know if you have want me to cover any other issues on this topic. I need to plan the posts in advance so that all link-up. Thanks.
Another question – Drug trials? Are there any & are they worth considering?As far as I understand there is no DMT for PPMS or SPMS so this might be a potential route.
Could you talk a little about disease duration and how you calculate it? And how other researchers are calculating it?From diagnosis? From that time I had a strange symptom in my leg 10 years ago? Or maybe that summer I was tired all the time? It seems like disease duration plays into a lot of our discussions here about progression and prognosis, etc. But I'm never quite sure if the research is assuming I've had the disease for 2 years or 15.
Hi Cat, it is pretty certain that your MS existed well before your diagnosis but obviously all the clinical studies calculate from diagnosis.
Disease duration is from onset of symptoms that can be confidently ascribed to MS. This is why the time from diagnosis is always shorter than disease duration.
Thanks for the replies!
9. What can or should I do to reduce the impact of my MS?10. What other conditions are likely to be impacted by my MS or treatments?11. Is this disease something the rest of my family needs to worry about developing? Will my kids?12. Do I need long term care insurance, and can I still get it?13. What do you suggest I read to gain a basic knowledge of MS and how to cope with it? Any suggestions for my family?While I think I know the answers (or current research) for some of these, I think these are questions some patients like me will want answers to quickly. We need to feel somewhat empowered after hearing we are in the process of possibly losing control of everything randomly.