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new here
Posted: Fri Oct 16, 2009 10:52 pm
by ahliasbat
hi everybody, i'm new to the site and don't quite know where to begin. i was diagnosed with M.S. and lupus a little over a year ago. since then i have lost one job, built up about $50,000 in medical debt as i am an uninsured college student on my own and had 7 major relapses while on Avonex and to top it all off i have yet to actually meet another person with M.S. so i have a lot of questions and and cant wait to speak with people who know what i am dealing with...
Posted: Sat Oct 17, 2009 12:24 pm
by Loriyas
Are you still on Avonex? With 7 relapses in a year it seems that it must not be working for you. Has a doctor switched your medication?
Posted: Sat Oct 17, 2009 2:45 pm
by ahliasbat
right now im not taking anything, one of my neurologists told me he wanted me to switch to Tysabri and ive been waiting about 2 months and the hospital still hasnt contacted me and told me whether they will take my case or not. im going to my 1st MS support group tomorrow and hopfully will get some help there.
Posted: Sat Oct 17, 2009 4:07 pm
by Loriyas
I would find waiting for 2 months to get some answers as to whether I was going to be taking a certain medication to be unacceptable. Someone should be able to get some answers for you. Sometimes you have to be a "squeaky wheel" in order to get the attention you should be getting. If you have had 7 relapses in a year the doctor should be doing something for you asap. Do they give you IV steroids when you relapse? What else has the doc done for you? Don't let any more time go by without someone paying attention to you. Now is not the time to be nice and patient. You have done that far too long.
Posted: Sun Oct 18, 2009 12:07 am
by whyRwehere
I thought if you were a college student, you would be insured through the school if you had nothing else. If you are near Buffalo, you could try to get tested for free to see if you have the ccsvi problem....worth looking into anyhow.
http://www.buffalo.edu/news/10562
If you have the debt, because of hospital bills, try to apply for financial aid through them(the hospital)
Posted: Sun Oct 18, 2009 5:01 pm
by ahliasbat
yes ive been on steroids whenever i have a relapse. with my last one i had the most meds to date-6 days of 1000ml a day then 600mg over 2 weeks. ive had an lp an ekg ct scan and about 6 mri's. im guessing im not high priority enough for them since im uninsured and broke but tomorrow im going to get a caseworker to try again for disability and medicaid so wish me luck everyone!