I also spoke to a high school friend who works for a Neurology group at IU and told him about my condition. He filled me in on the group and their work and advised me it is generally a 6 to 8 month wait for an appointment. I have no complaints about my treatment here thus far, just communicating with everyone and keeping my options open.
I received a letter Friday from FSSA telling me I had missed an appointment. This is the only letter I received about the appointment-I was not notified I had an appointment or I would have been there. Not only that, but neither of people authorized to act on my behalf received anything, and they are supposed to be notified as well. I guess on Monday I will have to call them to reshedule.
On a related note, I found this article about the privatization of FSSA that I found interesting:
On Thursday I received an information packet regarding Medicaid after 8 weeks so they can start their work. So much paperwork, so little energy. My core body temperature continues to fluctuate. This afternoon I woke up at 95.6 degrees and it has been up and down all day, currently at 99.7 degrees. I just really feel bizarre. I have asked other MS patients about these types of issues and read about it some and it is very common. Some patients quit having this trouble after a while on the medicine and others have persistent problems. I sure hope it mellows out for me.
For anyone who might be interested there is a web event on Wednesday, August 26, 2009 for those who have loved ones with MS. If you would like to learn more I encourage you to check it out. I would personally like to call attention to the fact that just because you may know someone who has Multiple Sclerosis (maybe even several), it is important to remember that MS affects every single patient uniquely. Also there are several different classifcations of MS and disease progression often remains a mystery, even to the patients and their medical providers. One of the things MS patients cringe at the most is to reveal your condition to someone only to have them jump in and say something like "Oh, I know all about MS, my sister-in-law has it" or something similar. It truly is frustrating and happens so freqently it becomes a "roll your eyes" moment. If you are truly interested in your friend or loved one's life with the disease the best thing you can do to be supportive is listen. Your loved one's experience may be entirely different than what you are familiar with. Anyway, the link to the webinar is here:
I have no interest or affiliation with this organization, just thought it might be interesting to some who read my blog. I am not familiar with the content as I haven't seen it yet either.
