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...

I Hate When Things Don't Work Out As Planned

I'm sitting here on my butt when I should be at the very least doing homework but instead I'm contemplating even staying in school.

I got a phone call a while ago, a call I knew was coming, even expecting to confirm my appointment with Dr. G (my neurologist).

An appointment I was very much looking forward to, I know how weird does that sound, right? But I have been having alot of pain that I wanted to talk with him about and some other questions I needed to get answered. I fully expect every morning when I wake up to be in the midst of an MS crisis because the pain in my neck has been so bad for the past few weeks.

 I get the call and this little voice on the line informs me that because I don't have any insurance I have to pay $100.00 up front for the visit. Well that wasn't a surprise its always been that way. I have been saving that $100.00 since Christmas so I would be able to see Dr.G. BUT then this little mouse of a voice proceeds to tell me that I have to also make a payment towards my account or they wont see me. Well me not really expecting this just said OK and hung up the phone. Then it hit me...I cant come up with any money on the fly like that, its taken me weeks to save the money that I knew I was going to need.

So now as I sat there contemplating this turn of events crying hysterically thinking calmly I realize that now I have to call the doctors office back and cancel this appointment. Have you ever had to call and cancel a doctors appointment? They always want to play 20 questions, why are you canceling, do you want to reschedule?

It always tears me up to tell them no I cant reschedule because I cant afford it. I can just see them making so big red X on my file so that way everyone will know when they look up my name.

Its pretty sad that we live in one of, if not the best, medically advanced countries in the world but it cost so much for medical care millions of people are doing without care because we cant afford it.

Why finish my degree when the people that would most need my help will never get it because they cant afford it? I cant even help myself how am I going to help them?