This is very interesting information that I had never known about.
I am one of those few persons that actually improved (not just stopped evident relapses) about 9 months into treatment, so I wouldn't doubt at all that the BBB was compremised beforehand. My neuro said that the Copaxone probably gave my brain time to heal. I have noticed some degeneration (literally and figuratively, LOL), but maybe these where these old areas that were just making themselves evident. BTW, these images are taken at 5 mm slices on a 1.5 machine that could theoretically could have easily been missed if they were faint anyway when they were first there.
I cannot predict at all what my neuro will do. I know that he's not a lesion counter as I would probably not have been diagnosed in the first place if he was (on the fewer end, though). However, I haven't the foggiest clue as to what he will suggest based on everything I've been through. Plus, it does look like someone splattered my brain with white paint. I do know that he doesn't mind going the aggressive route when it comes to treatment, but he is also conservative when he knows something is working. He may expect me to know a little bit about Tysabri since my sister is on this treatment and ask me what I think about it, so I better be prepared, just in case.
As you can tell, I go back and forth, back and forth on what to do. Thankfully, I can trust my neuro on the right move for me, but don't want to be ill-prepared for a decent conversation with him. This information will help me, so thanks again, Bob. I was hoping for a response again from you.
Talk to your doctor. It takes Copaxone up to 9 months to begin to modify your immune systems. Damage and the breakdown in the BBB can start up to 2 years before T2 visible lesions form. This has been demonstrated by MT-MRI. So a lesion showing up today could have started quite a while ago (years ago.) This explains why some MS patients never have active MRI lesions. The BBB is defective and leaking long before the T2 demonstrable lesion forms so there is no active transport of GAD across the inflamed endothelium.
Some doctors are lesion counters and some want to see how you are doing clinically and in term of "quality of life." We constantly want the doctor to stop praying to the MRI god, but we worry when the films change. Based on the studies and timelines, I figure I may be almost 3 years, even for a working DMD where you may see lesions continue to form on MRI.
Find a neuroradiologist to talk to. Many have a very different view of what MRI can and can not detect and what "lesion formation" might actually mean.
Thank you so much for the support! My doctor is on a very loooonnnng one and a half to two month vacation which started today! So, my appointment isn't until October--the luck of having my MRI and appointment so close to when he scheduled a vacation!
I really hate the idea of changing medicines! However, I don't want progression either. It would probably help to look into the newer medicines and post a few questions about them before I see my neuro to be better prepared to make some well-informed decisions (if my neuro thinks a different treatment is needed).
Hi Hon, I just wrote you a note and then realized you had this posted. So sorry you are going through this.
Hang in there ... we are here for you!!
If I had an increased lesion load I would definitely try another DMD, but that is me.
There is a lot of literature that equates attacks to breaks in the BBB. Which is something those meds seek to protect against too - not just clinical attacks. One med may work for one, and not another.
When is doc back in so you can discuss?
Thanks for your input. I probably shouldn't have looked at the MRI copy myself and waited to go over it with my neuro because I am definitely not the expert. It sure was a shocker!
I have really liked Copaxone because of the lack of side effects, so the thought of going on another drug makes me a little bit anxious. I will trust my neuro's opinion, though. He always seems to guide me into the right treatment. My choice is to stay on Copaxone, but if he thinks it's not doing its job, then it's time to try something else. I can't go on anything that lowers my immune system (positive TB tests), though. My choices would be limited.
I will for sure talk to my neuro about the headache question. It'll be interesting to hear what he has to say.
If I'm not mistaken, DMD prevent (or prolong) the period between exacerbations and prevent the development of disabilities. Many people on DMDs continue to increase their lesion load.
According to the prescribing information, Copaxone does not prevent the development of lesions. "COPAXONE is indicated for reduction of the frequency of relapses in patients with
Relapsing-Remitting Multiple Sclerosis, including patients who have experienced a
first clinical episode and have MRI features consistent with multiple sclerosis."
You are a member of your health care team you can bring any of these questions up. I have never read my MRIs alone. My Neurologists have always gone over them with me. Usually showing me the previous one as comparison. Some Neurologists think of migraines as separate some think of them as part of MS. My symptoms for migraine go away with the headache. The symptom can include numbness on one side and blindness in the eye.
By all means if you are questioning your DMD you can bring it up ask about other options.