Yesterday was exactly 1 year from the day I did my first Lemtrada infusion. I also had an appointment to see my neurologist at his new clinic to try to actually get on the schedule in their infusion center. We had a hell of a time trying to even find the place because the appointment scheduler gave me the address to the wrong office! That office told me that on Wednesdays he is in the “San Bernardino office” so I pulled up their website on my phone to look at the addresses for all their locations. There was only one other location and it was on San Bernardino street so it must be that one right? Nope. We showed up and after walking around and not finding what I was looking for I called them back to try to figure out what was going on. Apparently, the location he was at is not on the website so I took down the actual address and we were off to another location. This time, we pull up and it’s a pharmacy that shares a building with what looked like a physical therapy clinic so once again I call them back. Finally, they tell me that I am in the right place; I just needed to check in at the physical therapy looking place. Weird but it was definitely a doctor’s office so I am not sure if they just bought the building or what. One thing was for sure, this clinic was not sponsored by “big pharma” and when I brought it up that was one of the main reasons my doctor was happy to have moved here; no crazy red tape and they actually run a foundation that pays for any healthcare (be it prescription cost or an MRI) a patient might need so now all his MS patients “can get what they need instead of what they can just afford”.
Anyways, when I originally schedule my first round of Tysabri they also put me on the schedule for September 26-28 which would have been next week so after 3 weeks of calling and leaving messages about getting on the schedule but getting nowhere I was a little worried. They got me in pretty much right away instead of in 4 hours like the appointment scheduler said a new appointment for the same day would take; this tells me they are not crazy busy with a huge patient load. So when I sat down with him he told me “oh don’t worry, you’ll be doing it next week” but he tends to say something is going to happen with the attitude that “just chill, I will make it happen” and most the time he does but this time I was still a little unsure since I am not familiar with how this clinic typically works. When I asked one of his nurses about it afterwards she said “yeah, probably more like 2 weeks or so” which is still ok, I am just happy to be getting somewhere with it. So we will see!
But yeah, I will be doing my second (and hopefully final) round of Lemtrada in about 2-3 weeks. I really just want this done and I am so close! Hopefully the time will fly. In the meantime, I have an appointment with an ophthalmologist tomorrow and I have spent a lot of time trying to more accurately define the characteristics of my vision issues and identify triggers so that I can give a little more detail than “everything looks like its moving around and it makes me dizzy” so hopefully something good will come of this. It’s really frustrating that no one else can see what I am dealing with, that no one really understands how debilitating this is, I don’t even fully know how to tell someone at the Social Security administration about this! Those people don’t even understand how RELAPSING REMITTING works and I am supposed to think they will understand how a symptom like Oscillopsia works? All they understand is what they see and to them I look great! UGH! Invisible symptoms… Anyways, I have to look up a term my doctor used when describing a characteristic of my vision yesterday so if I find anything interesting I will write about it.