MS Update-August 2016

On my birthday of this year, I will have been on Tysabri for eight years. It is so hard for me to wrap my mind around that because at times it seems like I just started yesterday. I also look back, and I see how far I have come and how much I have learned about the healthcare system in this country. I also have learned the most drug companies have programs to make medications cheaper and that give them to you for free.

As I sit here and think about the first infusion that I ever I had I am amazed that I am a still taking this medication. I had an atrocious reaction to the first treatment so I wasn’t sure if I would be able to stay on it not to mention how much money it costs every month. I don’t know that I ever wrote about what happened the very first time I got the medication, so I am going to add it to my list of things to share.

I have to wonder what my life would be like if I hadn’t started Tysabri and if I wasn’t on any treatment. I have been stable the entire time I have been on the medication which for me is a huge deal. Since I have been diagnosed the MS was never stable but like I said it has been for eight years.

It also has given me my life back. Okay not given me my life back because I have no idea what it would feel like to be a normal functioning person but it makes me feel like I can anything I want to do. I still have hard days, but I don’t want to know how much different things would be if I didn’t have this medication.

Those are just a few of the thoughts I have about having been on Tysabri for eight years. I will be back with a small MS update in the next few weeks as well. Let me know if there is anything you would like to know about as well.

I saw my neurologist on August first so I figured I would just write down how I have felt so that I have a record of it. Nothing changed when I saw her, but I haven’t felt good for months. I can’t remember the last time I felt this bad for as long as I have lately. I am sure it was like this before I started Tysabri, but I have been on it now for about seven years, so I don’t remember how I used to feel. I know part of it is the heat and another part I am sure is because of stress. I started a new job in January, so it has been an adjustment in that sense, and I just moved to a different part of the company, so I know have to learn all new stuff which can be stressful at times.

I have been having severe headaches lately, and my sleep has been the worst it has ever been. I only sleep for an hour or two a night which I know is also contributing to my headaches. I know that there is nothing that can be done to make me sleep better because I have yet to find a medication that will help me sleep, so I just have to make due. I am so glad that I have a job and insurance, so I can’t complain about the stress of everything. I know I will learn whatever I need to know soon enough, and the people that I am working with are so friendly and helpful.

I also feel like my eye site is getting worse, and I find that I am starting to read more digital books because I can make the font bigger, so I don’t have to strain my eyes as much. I have to schedule an MRI for October, so I have to wonder if the disease is still stable. Those the few things that I wanted to share so I will have another small update after I get my next MRI and once I have those results.

The World As I See It

8 Years On Tysabri – MS Tuesday

A Small Multiple Sclerosis Update