Multiple Sclerosis (MS) Support Group
This community is a place where members can discuss current events and weigh in on what's going on in the world.
I had 5 appts. today at a 'MS' clinic held once a month. This was my first time there. I had appts. with O.T., P.T., case manager, speech therapist (cognitive testing), and neuro. All did testing (except neuro. and case manager) and got baselines for future reference. I liked the 'one stop shopping' so to speak and I've never had any of the testing they did before. Apparently at the end of the day all parties (except the patient) get together and discuss the patient's current state of health. It was a long day, but it went by quickly and we (hubby and self) even got tickets for free lunch! They also had a lounge with food and drink for us between appts.
Have any of the rest of you experienced anything like this? I thought it was great! Unless my next MRI shows progression, I won't get scheduled for the full 'clinic' again for about a year or so.
Yep, another MRI. Hmmmm, how many does that make? This one with dye. I'm pretty sure, if I understood correctly, that neuro. is thinking (and I have been thinking same) I do not have RR, but progressive since I don't think I have exacerbations so to speak, but have noticed a very slow, but definite decline. This is pretty scary. He also mentioned tysabri and asked me if I had ever heard of it. Apparently he doesn't think the Avonex is really helping although he never said this. I guess what is on the MRI will determine what happens next. It's crazy...pictures from a machine will dictate my future. This seems so odd, but I am probably not thinking clearly as it has been a long day.
I think the MRI guy and I are soon going to be on a first name basis. I have seen him more than my neuro. or my primary!
Have any of the rest of you experienced anything like this? I thought it was great! Unless my next MRI shows progression, I won't get scheduled for the full 'clinic' again for about a year or so.
Yep, another MRI. Hmmmm, how many does that make? This one with dye. I'm pretty sure, if I understood correctly, that neuro. is thinking (and I have been thinking same) I do not have RR, but progressive since I don't think I have exacerbations so to speak, but have noticed a very slow, but definite decline. This is pretty scary. He also mentioned tysabri and asked me if I had ever heard of it. Apparently he doesn't think the Avonex is really helping although he never said this. I guess what is on the MRI will determine what happens next. It's crazy...pictures from a machine will dictate my future. This seems so odd, but I am probably not thinking clearly as it has been a long day.
I think the MRI guy and I are soon going to be on a first name basis. I have seen him more than my neuro. or my primary!
And even with RRMS, you can have a slow progression, as I have. Good luck, and glad you found an MS clinic!!
dd
I don't know how many MRI's I've had within the last 12 months--probably 6? Well, 5 of them were done all at the same time. The part I hate about the MRI is that each time I get one I have to pay $500. For some reason, insurance doesn't pick this up. With the dye contrast, it is possibly even more $. Can't remember (don't want to remember big bills LOL).
I feel very luck to have my neuro. and the MS clinic to boot. It will be interesting to see how things change according to my baseline.