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About Me
mssucks
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About Me
Have had MS since 1992. Diagnosed at the age of 19. Have relapsing-remitting form.
Have had MS since 1992. Diagnosed at the age of 19. Have relapsing-remitting form.
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Interests
Reading, cooking, Kundalini yoga, foreign films, indie flicks, 80's pop music, driving my car to just get away from it all, sometimes.
Reading, cooking, Kundalini yoga, foreign films, indie flicks, 80's pop music, driving my car to just
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Journal
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Hugbook
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Vermont sounds wonderful! We are going to Denver in a couple of weeks to see lots of family for a get together arranged by my mom. Should be fun. I have a son and daughter-in-law there. He just graduated from college and started his first real job. She is an artist for DC comics. Also, I have a brother and sister there. Plus, an uncle and aunt. My mom and stepdad are driving over from Missouri to meet us there and our daughter who lives with us is coming along. So should be lots of fun! I am feeling better. Copaxone is a pain though. Literally! It hurts so bad and I know I'm not a wuss I've been through natural child birth! But geez I can hardly talk for about 20 minutes after a shot and it takes about an hour before the pain starts to subside. My next appt. with my neuro is on Oct. 23rd. I don't know how long she'll leave me on Copaxone. I use a heat pack, but it doesn't really help much. I tried cold, but that makes it worse. Ouch!!! By the next day it's only sore and they don't itch or turn red at all. The good news is I did recover from my relapse so I am feeling pretty decent again even my fatigue is manageable now. Are you feeling okay? I don't know if I could handle steroids once a month. How many days do you get them? Although I guess as long as it keeps your symptoms under control and you're feeling okay it's worth it. Take care and thanks for the flowers.
Neener-
Flower
How are you? It's been awhile. Hope things are going well for you. I'm having another relapse and we've decided that the Rebif really doesn't seem to be working. My neuro wants to put me on Tysabri, but said that most insurance will deny it unless you fail two of the MS drugs first so she is switching me to Copaxone for a short time then is going to start the approval process for Tysabri. Right now I'm doing Solu-Medrol again. So I didn't get much sleep last night. I'm pretty wiped out at work today and it's the first week of classes here at the university. Fun stuff. However, I spent the two hours of my infusion last night talking with a guy my age who is dying from cancer so I realize there are worse things than MS. He also lost both of his young daughters during the last 6 years to cancer. His family has a problem with one of their chromosomes which prevents them from fighting off certain types of cancerous tumors. His dad and sister also both died of cancer at young ages. His brother both drowned. So sad. He was such a nice guy too and looked so good. He was getting an infusion because his immune system was attacking his central nervous system. My neuro has an infusion center at her office. Anyway I really felt drained after talking to him for 2 hours. So if you have anything happy to share I love to hear it. :)
Take care,
Neener 
Hug
thankyou so much for the kind words. it really is appreciated.
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Hug
Hi! It's great to hear from you. Thanks for the hug. No I'm not on Tysabri. I convinced my doctor to let me stay on Rebif, but she said if I have another relapse anytime soon I will need to try something else and she recommends Tysabri. I did finally get over my never ending relapse. What a pain. It's so nice to feel good again. Now I just have to hold myself back so I don't over do it. I'm looking forward to enjoying summer. We just got back from a trip to Philadelphia and next month we're going to California. Hope you're enjoying your summer. Take care.
Present
today-stopping by with another big ole box--you get to put 1 thing you hate in it.....maybe just maybe it will go away!! if you want to tell me-- whats in there--i am so nosey!!
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Photos
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Support Groups
Close Multiple Sclerosis (MS)
Type: Relapsing-remitting MSI'm 36 yrs. old & have had MS since I was 19. I was diagnosed in 1992. It sucks.
Treatments
- Betaseron Not Working
- Sucked. Made me lose so much weight that I was down to like, 100lbs,, which was cool, but I looked so bad. And I was bruised all the time that my husband couldn't even give me the lightest of hugs because my entire was just in a perpetual state of PAIN. Off it now. Have been doing monthly 1,000 bag Solumdrel/Methyl-Prednisone traeatments.
- Copaxone Not Working
- Sucked. Got off it.
- Prednisone Not Working
- Sucked.
- Provigil Working / Worked
- Made me into a spaz.
- Rebif Not Working
- Sucked. HURT!!!!! Made me cry every time I had to take my shot.
- Solumedrol Working / Worked
- Have an IV once a month. Fine right after, except that lights hurt my eyes. 2nd day - full-on spazzy rage. Third day - muscles feel as if they are being ripped off my bones. Good stuff. But I refuse to go on Tysabri, so this or nothing is my only option.
- Yoga Working / Worked
- When I have the energy to do it it does help. I do Kundalini yoga.
- Meditation Working / Worked
- I try and meditate as much as I can but Ive been really busy recently so i really havent been. I use crystals and that really amps up the level of healing meditation. Reccommend it for anyone no matter if you have a disease or not.
