Welcome here! Always good to see new faces pop up. It sounds like your neuro is going by the clinical signs he sees in your exam - that is the best way to track what is going on with our disease. MRIs don't always show activity that is going on in the background.
You could always go back on Copaxone - remember it isn ot meant to cure your MS, but just slow the rate of relapses. It sounds like going 2.5 yrs without a relapse fits the profile of copaxone.
Good luck with the MRI - I'm sure your neuro will get over you asking your PCP to order it in addition to his lab orders.
We are in charge of our medical care - not them, so don't feel like you have to be afraid to be in control.
best,
Lulu
Thank you for sharing your DMD experience. I'm sorry you had problems with so many of them. Wishing you well on Monday and as you move forward with your decision-making.
Best,
Jane
I'm going with the Mri on Monday. I've already told the Neuro's office that. They did not sound to thrilled. But it is my body and my money!
Thanks JJ!!
Miracle49
In my opinion, its your body which is the more reliable tool, your clinical sx indicate relapse by the return and or production of new sx. The MRI is but a tool, not perfectly accurate because it can still fail to pick up smaller lesions and for a host of other reasons so from my perspective YOU are the best indicator of new disease activity!
I wouldn't wait a month though, time can make a difference sometimes. What I would do would be to call your neuro's office and say your GP had also ordered an MRI as well and he/she has managed to get you in a month earlier. You would feel much more comfortable, if the MRI was done as per the neuro's standards, so would it be at all possible for them to arrange the neuro's MRI on such and such a date?
If your already scheduled for an MRI, it probably isn't any bother for anyone, and worth a try. DMD's are not perfect either, it is a hope for a reduction of disease activity, slow it down etc, they dont always benefit everyone though with the common figure of 33% benefiting being stated. You definitely have a catch 22 situation, do nothing and the disease is free to do its thing. Do the DMD's and get even more sx to deal with and still the disease activity is happening at an unexceptible (at least for your neuro) rate, so your dilemma is understandible.
For what its worth, if your leaning towards going back on a DMD, but your needing to see MRI evidence that your in relapse or have more lesions before you can commit to going down that road you've already travelled, then i hope you listen to what your body is telling you and give it another try.
Good luck in which ever way you decide to go!
Cheers...........JJ
Avonex and rebif my white blood cell count got really low(i think low) any way it was off enough for them to take me off the dmd's. Because the count was so unusual they thought there had to be something else going on so they sent me to an oncologist. had to go every month for 3 months to have my blood checked. they couldn't find anything wrong. My blood count came back up during that time. with both these med's you go every so many month's to have your blood checked. Can't remember whether it was once every month or every 3.
Copaxone I was on for 2 1/2 yrs. did fine and then I had a relaspe in 2010. after cking the mri there were a couple new and active lesions and neuro decided I needed to get on a more aggressive therapy. Hince Ty.
After being on ty for 6 months and testing Positive for Jc virus I told them i no longer wanted to be on that paticular therapy and take that risk. That was in July of last yr. I have not been on any therapy since.
Went to see neuro in Nov 11 and I've already given you the rest of the story.
Not that I don't want to be on therapy b/f I start a new one.I just want to know where I stand. Hince The request for the Mri.
I definetly believe I am in a flair though. Just not sure whether it's the begining ,middle or close to the end. So does my neuro.
Thanks!
miracle49
Yeah, I can see why this is tough for you. Do you mind talking a little more about which DMD's you tried and why they didn't work for you? I'm newly diagnosed and on Copaxone. I'm just curious to hear about the experiences of another who has had a diagnosis for longer than I have.
It sounds like your neuro is so confident that your MS is progressing based on your clinical symptoms that he doesn't feel he needs to see another MRI to "know" that you should be on a DMD. Of course, the bottom line is, you will go on a DMD when you feel it is time for you to go on a DMD. And it sounds like for you the proof that your MS is progressing to the point where you would start a DMD needs to come via MRI rather than your clinical symptoms.
In all honesty, as a third party, I hope for you that you will be able to find a DMD that works for you so that you can stick with it. From the symptoms you describe, it does sound like your MS is progressing. Many DMD's take months to work their way into the body, so the earlier we start the sooner the DMD can help.
Like I said, I'm new to this, so my opinion probably sounds naive... but for me, I will probably stay on Copaxone as long as I can whether my next MRI shows more lesions or not. I don't want to wait for new lesions to come, I want to keep new lesions from ever showing up in the first place.
I'm so sorry you've had problems with DMD's, and can't imagine how hard it must be to make the decisions your currently faced with. From what I understand about Tysabri and the potential (albeit rare possibility) of CSF virus problems, I would probably be scared to take it if I tested JC positive too.
- Jane
Hello, I'm wanting the Mri to make a decision on yet another DMD. I've been on 4 different ones since 04. But b/f moving to them we had always done an MRI to see where I was in the disease process.
It's that I'm choosing not to be on one it's just that they keep getting more aggressive with serious side-effects. If the Ms is getting more aggressive than fine I can understand a more aggressive approach. But I would at least like to see for myself. Not JUST based on research data.
It's important to him b/c he really does care. He wants to keep me mobile and I REALLY appreciate that. but just like he bases his suggestions on research studies,there are things I would like to base my decisions about these meds on also.
Hope that helps.
Thanks so much !
Miracle49
Seems you're in a tight spot. I'm sorry to hear it. I don't know what I'd do in your position, but I have a few questions that might (hopefully) help to work through things.
What are you hoping to see on the MRI and what do you plan to do with the results? (I.e., are you thinking they will help you make a decision, or are you hoping they will help you convince your neuro of something?)
What are your reasons for choosing not to be on a DMD? (I'm not trying to imply here that you should be, I'm honestly asking what are your individual reasons for avoiding DMD's).
Your neuro seems to really want to get you on a DMD. Do you have any insight as to why this is so important to him?
Best wishes. I'm really hoping we can help you work through this tough spot.
- Jane