Tuesday, August 4, 2009

Its been a while but I have had a lot on my plate

To put a long story short, I had to have some lady surgery which thrust me into a terrible relapse which just keeps getting worse. I had to withdraw from the study for some real treatment. I havent seen my MRIs in a year and a half and have no idea where Im at except I know my symptoms are worse. I have an appointment tomorrow with a Neuro about an hour out of town. The VA is now picking up the bill because they have rated my condition service connected. I am only getting 30% but the woman with Disabled Veterans is helping me with the paperwork to get 100%. I currently cant feel most of my body and have not left my room for 2 weeks because im doing good to get to the bathroom and back. My husband moved our mini fridge into our room so I have easy access to drinks and food which i usually pick up on my way to and from the potty.

I am worried that I am in Progressive MS. Hopefully they will request an MRI so they can see if my lessions are getting worse. I have learned that I need to start being more honest about my condition. I try to pretend as if everything is ok, but in honest it isnt and to get the treatment I need I need to lay it out as it is. I have been trying to protect my family and I guess my own sanity from worry but it has gotten to a point where that is just not possible anymore.

I plan to ask the neuro for a recommendation to the VA for a wheelchair. I bought a cane at walmart to help me get to the doctor but a chair would be so much nicer and faster. I also hope to get him to sign off on a handicap pass for my car. My mother was here for a month helping me and she has one and boy was it convient and helpful.

I will try to keep up with what is going on and maybe give some back info.

Penelope

3 comments:

Skye August 4, 2009 at 7:31 PM  

You're in my thoughts Penelope! I sincerely hope that things ease off for you soon!

reiki24,  September 3, 2009 at 8:38 PM  

Penelope,
I hope MS has settled down. You are doing the right things. Keep believing in you and always remember; you have MS, it dosen't have you! Good luck!
Joey

Lisa Jo Rudy September 24, 2009 at 12:43 PM  

Thought you and your readers might be interested in a clinical trial for a new oral MS med:


http://www.pharmabiz.com/article/detnews.asp?articleid=51683&sectionid=
This is great news from sanofi-aventis about their investigational oral medicine for MS, teriflunomide. There is currently a worldwide clinical research study that is evaluating teriflunomide for relapsing forms of MS. Click here for more information: www.tower3.msstudies.com.

Good luck,

Lisa

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