dodged the relapse bullet today!!!

    • Anonymous
      November 25, 2007 at 6:36 am

      thank godddddddddddddddd.

      past few days iv been a bit down in energy and slight weak. on thursday i rang the neuro clinic and asked for a new appointment closer to now to review and get more meds. they transfered me to bookings, who said they would email neuro and get back to me.. other words “goodbye, we dont care, cid, blah blah”

      last night i was a bit iffy in my left hand, so thought gotta keep at it for now and go out with friends and have fun! woke up this morning, and hello dead numb hand and cant move fingers… i wanted to puke and cry. i couldnt do my pants button up for the first time in 7 months!!

      I tried squatting down and standing, and got I stuck and needed my friend to lift me up, so my friend took me to the emergecy room and i made it clear that if i wait too long, itll get worse. i need steroids and to be seen soon. well somebody listerened, cos in under 2 hours i had a script and a bottle of methylpreg (500mg a day for 7 days!!!!!!!!!!!) thats alot and im gonna puff up again! and its been 8 hours now, and my typings back and hands are not stiff and can lift groceries and a cup and soooo happy im not in hospital and having new lines punctured into my chest!!!

      So the point of this rant–. we know our bodies and how fast we can go down hill. so make yourself heard (but politely, no need for rudeness!!) and this thing can be kept under control…. now if only i can sleep tonight. ill let everyone know in a few days if the attack has died right down

    • Anonymous
      November 25, 2007 at 11:12 am

      You are so right about being our own advocates — only you know how you feel! I am glad you got a script and are getting some relief!! I hope you sleep tonight as well!
      Hugs from Iowa…

    • Anonymous
      November 30, 2007 at 5:19 am

      well had a emergency check up with neuro the other day… went spectacular. confirmed on the phone 3:30, they had 2:30, so waitied…. my notes from may were brought out and compared to now, even though ive been paralyzed sicne then….. did the push pull tests 3x, so was knackered by the 3rd doctor, who hasnt seen me in 8 months…. and he talked over me, felt like i was being listerend to, then he was quick to recommend putting a new line in… i was like hang on, its been 3 days since i couldnt use my hands and i can click and do stuff now…

      made me very mad,,,, but ive lasted the week and havnt got worse, just tired alot (also due to working 50 hours at work this week so far…..
      and it does take a week or 2 before i feel better….

      well all i know is that the line is not going back in while they havnt tried other immunosupresiants.

    • Anonymous
      December 2, 2007 at 7:26 pm

      im in the same boat
      new state and have to wait 3 months to see the new neuro- once I get a referral :hmm:

      stress and BS is making me fatigued and now my foot drop is alot worse
      Im going to go and get some prednisone and a referral this week at some outpatient urgent care

    • Anonymous
      December 2, 2007 at 7:41 pm

      Miss Darcy I just could not help but post when I seen a red flag in one hand and happiness for you in the other hand! I am impressed that you are able to 50 hours at work this week so far, but also fear that might be why you are not feeling so good and that you might add hours on to that amount. But on the other hand I am very happy you are here to tell us that you are able to work. Sorry I have mixed emotions! Stay well!