Dear All, I have recently been diagnosed with ms. I didn’t get told what type I have. Should I be worried? Is it important to know? Thank you
You need to know what type of MS you have been diagnosed with so you can start treating it correctly.
I`m a little confused now after reading your other post.
Sorry Scudger, I am new to this. What other post? I have so many questions and keep writing them on the forum.
At this stage, you are only interested in whether it is PPMS or RRMS. Only history; of about one year will tell the difference.
If you slowly deteriorate it is PPMS
If you get attack and remission it is RRMS.
Somebody could have an attack that last one year. Your Neurologist will possibly put you on DMT; if it does no good; could be your PPMS; or it could be you’re on the wrong DMD.
Welcome to the unsure world of MS!
Types of MS explained:
If you are classed as relapsing remitting, and most people are in the absence of any conflicting information, at least for the first year, then you are able to obtain a disease modifying drug (DMD).
It could however be determined that you have progressive MS from the outset, either primary progressive, where you never have stages of relapse and remission, or secondary progressive, where it seems clear that you’ve been having relapses with remission over years, but have now moved into a progressive phase where you are unlikely to get periods of remission.
At the present time, DMDs are only widely available for RRMS. This is because they are designed to reduce the number and severity of relapses. There is research going into drugs for progressive MS, but these seem to be some way away.
There are drugs available for ongoing symptoms for all types of MS, so access to symptomatic drugs is not dependent on which ‘type’ of MS you have.
Assuming you are diagnosed with RRMS, you should be offered a DMD. This is a guide to help you get your head round all of the varieties. You are likely to be offered a choice of several drugs. What you have the choice of will depend on how active your MS is and also, what prescribing centres are set up in your local area. It will also be heavily weighted by the preference of your neurologist. But have a look at the guide. https://www.mstrust.org.uk/understanding-ms/ms-symptoms-and-treatments/ms-decisions/decision-aid
If you have an MS nurse, it will benefit you to have a conversation with him/her to discuss options in advance of the appointment with your neurologist. The MS nurse will be familiar with the neuros preferences, but will not be able to tell you details about for eg how active your MS is deemed to be.
All the DMDs have their pluses and minuses. Many come with potential side effects, it’s a case of looking to see what fits your lifestyle, your personal preferences (e.g., are you a bit needle phobic? If so you might be better with an oral treatment).