DMD question

[babybear2200]

Hopefully I will finally have some answers on Tuesday. I was told I likely have MS and all appropriate tests have been ordered (no LP yet though) and I will get the results Tuesday. I have read a few things about DMD's and my bf, who must be doing a bit of research himself, asked me when I was going to start them and was angry the dr didn't start them or even mention them already with such strong feelings of the dx. Can you tell me more or give me some direction of where to go to learn more about this?

I HATE taking meds of any kind, and wonder what kind of side effects you all have found that come with them? Does the benefit outwiegh the cost?  Is there anything specific I should ask my Dr?

As always, thank you for your help here! I really want to be prepared with the proper questions on Tuesday. Anything else you can think of that I should know is welcome to ;) I hope you all are having a good night!

[Lulu54]

There is always confusion about DMD's, why they aren't started immediately, and what their purpose might be in the big treatment picture for MS. I could go on and on with commentary on many different angles, but let me just give you a hit list of points-
1- you don't start dmd's immediately BEFORE confirmed diagnosis because they are very expensive and you don't want to treat something you might not have

2- the majority of DMDs have a side effect profile - some more serious than others - and you don't want to take something that might possible cause problems if you don't have MS

3- unlike taking an antibiotic for an infection where time is essential, DMDs are slow to act in retraining the autoimmune system, so there is no urgency to start them right now before the MS diagnosis is made

4 -  Benefit vs risk is a very personal decision but we know that MS is always active - we may not be having symptoms at the time, but it doesn't stop or go away.  Taking the DMDs is the best know method at this point to guard against further damage from that activity.  

5- your doctor should talk with you about the options of treatment and not just tell you which one you will try.  There are many factors to consider when selecting a DMD, including agressiveness of your MS and how agressive you want to be to treat it. There are advantages to the well tested injectibles, which have been around for decades but there are equally strong arguments in favor of the newer oral MS drugs.  only you should make that final choice.

6- if you don't already do so, take someone along with you to your appointments.  This is all a lot to absorb and it is extremely useful to have another person in the room to help remember answers and give their input as well.  

7- an LP is not a requirement to having a positive MS diagnosis and many neurologists no longer do it but it is helpful.  You might not be asked to have one.  

Good luck with this on Tuesday -I'm glad you found this fine group of people who are always willing to help with an answer or listening ear.

~Laura

[immisceo]

This is a very helpful link that lists both DMDs and typical drugs used to treat our various symptoms. http://www.nationalmssociety.org/Treating-MS/Medications