Kemond wrote:They said I have relapsing remitting, but what constitutes that? Do the symptoms come and stay for a while (any time frame), and then disappear - so that is why it is RR?
Relapse remitting refers to the appearance of clinically relevant symptoms. By that I mean that MS attacks, or lesions in the central nervous system, come and go. Most of them do not produce noticeable symptoms. A clinical relapse occurs when an attack produces symptoms which "break through the ice" and poke their ugly head out where we notice them. The brain has some ability to compensate for the damage done by inflammatory attacks. It usually isn't until an attack occurs either in a sensitive area or the central nervous system can no longer compensate. You may want to refer to the graph on page 6 of this document from Opexa
(a company developing a new experimental treatment for MS). Note that the time line for the progression of MS given in the graph is probably an average. Some may progress faster while others progress slower. Hopefully, with the information that we share on this forum we can all be in the latter group. Anyways, here's a definition
of relapse remitting from the National MS Society.
Characteristics: People with this type of MS experience clearly defined flare-ups (also called relapses, attacks, or exacerbations). These are episodes of acute worsening of neurologic function. They are followed by partial or complete recovery periods (remissions) free of disease progression.
Frequency: Most common form of MS at time of initial diagnosis. Approximately 85%.
What is an attack? One symptom? A series of symptoms?
The NMSS also describes what they define as an exacerbation
My last question for now is how do I know the meds are working?
Not to sound flippant or anything, but that's the million dollar question. The current medications are designed to slow the clinical progression of the disease and they're not very good at it, meaning that they're only about 30-35% effective. However, if you continue to progress then you should discuss this with your doctor and they may decide to alter your therapy. One of your best weapons against this disease is knowledge. Read all you can from trustworthy sources. When I was first diagnosed and choosing a medication, I picked up a medical dictionary and went through the doctor's prescribing information with a fine tooth comb for each of the ABC drugs. Since I was at a university at the time, I took about a month or so and read a bit of the published scientific literature on the ABCs. In the end, I feel that I made an informed decision. Even so, I continue to expand my knowledge base and this site is helpful opening up interesting avenues of investigation.
Do I really wait until I have another MRI in November?
No. I would follow Carolsue's advice and keep a log book of any new symptoms you have. I've found that it's really up to the patient to keep the doctor updated on what's going on. If a lot of new things are going on, then let them know. It's better for your doctor to evaluate you while all that stuff is current rather than after it's passed. It may be that there are treatments such as corticosteroids, e.g., prednisone, which can be given to help nip an attack in the bud and shorten its duration.
I know I will have many more questions, and I appreciated your taking the time to read my post.
As others have stated, welcome to the board. There are many folks here who are happy to be of help.