Should I be on DMD'S or not- do you have an opinion?

[johnniebear]

Could help me out?  what are your thoughts,   should press the Dr to be on DMD'S.

I know it's costly- I've looked into the cost with my insurance company. They will cover it,  but I didn't ask what the approval process is.


I had my DX at the end of April- MS Specialist, he said it's mild MS & he thought RRMS  but doesn't recommend any DMD.


Now I had the follow up visit with my local Neuro .  The local neuro  had  recommended  I see the Specialist in the first place,   the local neuro  thought  is   CIS  or RIS,  and he also said no DMD  yet,  however prior to seeing the Specialist the local neuro had suggested maybe I should consider Copaxone.    
                                    
                               What changed his mind?


I guess my gut feeling is they are waiting for more time since the DX was based on the MRI'S and some clinical evidence, & the VEP.

Do I push these Dr's   for DMD's    or just wait?  
OR is nothing to be concerned with right now?


thanks

John..

[lovemy6monkeys]

My doctor is a huge believer in starting the DMD as soon as possible. Right now, I've officially had one suspected attack, so I'm CIS. If I had any lesions on my MRI in March, I'd be starting the process to begin DMD right now. Since the lesions I have are too subtle to be seen (no idea how the radiologist saw them!) I'm in a "wait and see" phase. I will have an MRI in November. If that should definite lesion(s) or if I have another suspected attack before then, I'll be started on DMD. My doctor is partial to copaxon, but the ultimate choice is mine.

I would push for the DMD.
~Jess

[Georgeios]

My nuro said i fit the bill for DMD's as i'd had more than 2 Clinical relapsis in 18 mths and said to check out www.msdecisions.org.uk for advise on what DMD i wanted, i found it to be really helpfill,
Because non are 100% or side effects free she said it was up to me to review them and chose what one I wanted, Rebif is the one im going to try and copax after is i find Rebif not going well.

[GrannyJo6]

I was officially diagnosesdin 2002 at the age of 52. I had probably had it for decades, in ffact my first event was in 1983. But an MRI showed the truth. My neuro said it is never too late to get started and put me on Avonex (my choice) right away. I've been on it since. Now however, after this last exacerbation, that will probably change to Tysabri. So, yes, there is no need to wait for anything! Check out the benefits of each one and let the doc know you have decided you want to give _____ a try. Sometimes you just have to be proactive.

[sllowe]

Johnny - I posted my response on the other discussion to you, sorry, didn't see this.

CIS and definite MS should be treated with a DMD, period !!!

Since your dx doesn't seem to be in question (local neuro dx'd and specialist confirmed - right?) then you should be treated.

Maggs, this Dr. said not BAD enough for a DMD? Oh, my, goodness! That doesn't have anything to do with it.   The opposite end of the spectrum is that once you ARE very bad off, there is not a whole lot they can do to help. Except to try to stronger meds which aren't always successful in stopping progression. Not knowing how the UK system works, I hope you can find an advocate here and work through the system somehow. From what I've heard here, they don't necessarily embrace the treat early facts.

I think we need a re-cap discussion on DMDs, I'm going to work on that for us.

-Shell

[supermum_ms]

Hey Jonniebear,

There is a lot of MS research out that highly supports the use of DMD's even if the patient has CIS. Benign or mild MS are also widley debated, due to the unknowns with MS and MS being so highly unpredictable, never exactly the same for each person.

It sounds like your local neuro might prefer the odds of doing the DMD's vs doing nothing. Do you gamble because thats how i look at it, DMD's increase the odds in your favour and the alternative is..........what?, hoping this unpredicable disease plays nice.

I'd be happy to find the research if you'd like, just let me know.

Cheers......JJ  

[rendean]

I agree with Jen and LoveMyB, that you should be on an DMD. I have read the studies Jen spoke of and that is why I am on Copaxone.

My local neuro wasn't gung-ho about me starting a DMD and told me that they only have a 30% chance of stopping the disease. Well, 30% is better than zero. My MS neuro agrees with me and told me to read about the different meds and choose the one I was most comfortable with. The MS neuro also told me it was my choice to take one, or stop taking one or to change and he would support my decision even though his advice is to slow the disease and provide a good quality of life now.

Ren

[LoveMyBostons]

I would definitely push to be on a DMD! An MS Specialist said that a diagnosis of RRMS doesn't call for a DMD? Did you misunderstand him? Or maybe I'm misunderstanding you :)

I am under the impression that the sooner you start a DMD the better. If it can slow your disease proression and reduce the number and intensity of your relapses then why sit back and let months slip by without being on one?

That's just my opinion.

And my insurance doesn't cover any of the DMD's either. I went through NORD to get my Copaxone.

[jensequitur]

I would push the doctors for DMDs, if you can afford them.  They've shown that Copaxone especially is good at reducing disability, and when taken early in the disease process, can really help with disease progression.

I don't take mine, because I can't afford it - but I would if I could.

[maggs970]

hi i am looking for the same answer as yourself i was told by my nuero that i wasnt bad enough for dmds but a friend i met through an ms group told me she had to go to a local mp to get on dmds