Thursday, August 18, 2011

MS Update...

...And not really unexpected news.

I had a visit with my Neurologist a few weeks ago because I had noticed my balance had been continually getting worse and I just had not been feel like myself...well atleast my new MS self. As I had suspected for some time the rate at which my health continues to deteriorate has increased. As I said, my balance has continued to get worse causing me to stumble on a regular basis and walking any distance at more than a snails pace exhausts me to the point I can not function. He also noticed that when I walk now I'm rolling one of my feet to compensate for the balance issues and dragging my feet more when I walk which also contributes to the tripping and stumbling.

He suggested doing an MRI and tweaking some of my meds. Increasing my Amantadine to 3 times a day and adding Ampyra 2 times a day also increasing my Nurotin to 300 mg 2 times a day and 600 mg at night. Like most medications for MS the Ampyra is extremely expensive so I had to wait to start it until I could get on an assistance program.
  Well that program came through while me and the Cable Guy were on vacation and my meds arrived a few days ago. The side effects are ugly but I continue to take it in hopes that I will get used to it and it will help. Unfortunately the success rate for this drug is only 30%. That is only 30% of all people with MS have any improvement in symptoms.

My MRI is scheduled for this afternoon after the required visit with the vampire yesterday for blood work. I have to admit I'm not very concerned by the test itself but the results of the test scare me to death. If there has been alot of change, meaning more lesions, my neuro wants to change my injections. This could be bad because I picked this particular medication, Copaxone, because it has relatively few side effects compared to the others.

I have to say that I have not really been satisfied with my visits with local neurologists and because of this I have been doing some research on other doctors that specialize in MS. I found one, an MS clinic, about 3 hours from here.  I have a MS friend who has an appointment there soon and if she has good results with them I will be pursuing that route.

 I have been having alot of pain in my neck as well as increased neuropothy pain and trouble with insomnia. All made worse by the fact I will be returning to school next week...

In the meantime here are some more pictures for our vacation...

1 comment:

  1. Praying you will be able to find a doctor who can help you, or at least one who you can feel like they are doing everything they can to help you!