During my long-awaited meeting with Dr. Pless this afternoon, I found out that the third MR found additional old and new lesions on my cervical and thoracic spine and the lumbar puncture found the three bands of protein that confirm the MS diagnosis. Additionally, Dr. Pless told me that the other blood tests and spinal fluid tests Dr. Cho gave me ruled out the three diseases that mimic MS--syphilis, Lupus, and Lyme Disease.
Well...that's a relief! I'd hate to have to join three more support groups and Ken might have issues with the whole syphilis thing. Actually, I might have some issues of my own with that one.
So, Dr. Pless told me a whole lot...some good, some not so good. First the good:
- I started the Rebif a month after diagnosis. Aggressive, early treatment is a very good thing and has been proven to reduce relapses, severity of relapses, and stop the formation of new lesions.
- I'm not having skin reactions or bad side effects from the Rebif which means I can tolerate it well.
- I am otherwise healthy, have been active (and even athletic) and, since I have no problems with mobility, there is no reason I can't exercise and stay strong as long as I don't get over-fatigued or over-heated.
- I don't drink or smoke (which I already knew but is apparently good for MS.)
- I am open to reading, learning, trying new things, etc. In other words, I am not laying down and viewing MS as debilitating. Attitude is very important.
Now the bad:
- I have many, many lesions on my brain, thoracic spine, and cervical spine. (The back pain is not in my head. Well, actually, it is in my head...my brain, that is. Hehehehe.)
- My vision may never fully return to my right eye because there has been a lot of damage to my optic nerve. 5% of people with MS do not get their vision back after optic neuritis and, based on the what he saw on my right optic nerve, he thinks I'm in that group.
- I have to get my blood taken once a month to make sure that the Rebif isn't destroying my liver.
- I have to get an MRI every six months to see if the Rebif is working to slow the disease.
Ok. So all in all, it was a good visit. My wall of denial has another chip in it (how many doctors have to say I have MS before I totally and completely believe it, I wonder?) and I like Dr. Pless. He's smart, obviously valued at MGH (big office with adjoining exam room), not arrogant, left tons of time for my questions, liked me (very important!), specializes in MS, and seems to have a very positive, aggressive approach to treating this monster of a disease. He told me that he has a patient who has had MS for 10 years and she runs marathons and is training to climb Mt. Everest. I want to be her. Well, not her exactly (I kind of like being me!), but I want to be that kind of active. I told Dr. Pless that my friend Christina believes I am going to end up lobbying Congress for stem cell research and he thought that was a very good idea. I told you...smart guy.Oh! I almost forgot the absolute best part of having my appointment today. While I was taking the train to MGH, Boomers was installing my car stereo (that was a MUCH APPRECIATED hand-me-down from Karen Teacup). I have tunes at last!
To summarize: I have MS, I don't have syphilis, and I can now sing at the top of my lungs with actual musical accompaniment in the KGB car.