Actually, I suppose I don't have it so rough compared to some stories. The infusions aren't exactly what I call pleasant, eh? I could get on such a work or cleaning jag if only I had some strenght. I feel like a limp dishrag is the best way I know how to put it. I am so weak and tired, but my body feels all wound up and jittery at the same time. Also have some muscle and/or bone pain that I could The funky tasts in my mouth has ruined all food and coffee, but I did find sour candies help cut the taste (thaks fo rthe tip)

I feel like such a slug, laying around sort of naping, but yet some insomnia at the same time. I just want to sleep (real sleep, not couch potatoe laying around). I findd that I am getting a tad bit short tempered but am trying to keep my big old trap shut to protect the innocent

I am getting a new IV eachday as I do not want that port thingy - I wouldn't be able to use my cuff crutches if I had the port since it wuld be in the exact wrong place; plus I have 5 cats who would probably find it a neat new toy.

Yesterday was my birthday so it got shot (no worries we will celebrate later) - only today and Saturday left to go YEAH!!!

***How long will I feel icky as I have to fly Tuesday for an ut of town trip thru Friday eve?

I had steroids last month (3 days IVSM, last infusion was May 6th) and I had about two weeks, or maybe 3 weeks of either reduced symptoms or no symptoms, and then every thing came flying back and I feel like crap and have horrible fatigue now. (and insomnia)

I dont know if the steroids failed, or if they simply just wore off. The numbness is irritating (numb from about the chest down, but I also have numbness in both arms) Both legs feel weak, and I fall asleep everytime I sit down, but cant fall asleep when I lay down (too uncomfortable I guess)

It was about two weeks after finishing the oral prednisone taper that I noticed my symptoms were coming back. My left hand has been numb since last fall, and that didnt seem to change with the IVSM this time around. When the symptoms started to come back, the numbness in that hand increased. I woke up one morning and my butt was numb and it seemed like the rest of me went numb over the next day or so. It doesnt seem to have gotten any better.

When I was on the steroids, I noticed that garlicky foods seemed to be what my stomach and mouth craved. I could still taste the steroids, but the garlic in the foods I was eating seemed to taste ok to me...a little steroid-ish, but not enough to turn me off from eating Italian or Greek foods. (lemon in the Greek foods didnt seem to cause me a problem either)

You may feel bad for about a week after your last infusion. Rest as much as you can.

I just read my last post above - gee I thought it was perfectly spelled. Ha Guess I was a little off eh?

Regardless, to day is my first day not having to go in for an infusion YEAH. I do feel better then earlier in the week, but not great. Loafing around today trying to get back to normal feeling. I am sort of worn out, taste is improving but a bit metal-ish (at least I ate and it wasn't reveolting to my taste buds). Still sore but leg is working again like it used to. Seems to have stopped the flare from getting really bad so I consider it either a total success or a fluke. Either way I am happy I feel better - could have benn the drug or just plain time. Side effects were not exactly fun but as my husband said, everybdy needs some "veg" time every now and again. He was great and my girlfriend was super taking me to the hospital, visits, etc. Shows me I am loved.

Now just trying to get back my energy- the mind is willing but the body is so easily fatigued just doing normal things like getting a cup of coffee, etc. Gotta pack for my work trip and take a shower sometime. Thanks you all for checking in on me and walking me through this infusion - it helped calm my mind and let me know all was going as expected.

Last yr was the only time i've ever had the medrol (1g x 3 days). What I noticed was once I woke up (which was earlier then norm) I didnt lay there long. Was like what I imagine speed is. Wore off after the few days and possibly helped my pretty darn good eyesight. Eyesight couldve been blurry from pressure behind eye. Never had the test before the medrol. Eye is still slightly blurry.

Energy try 500mcg B12 + 200-400mg Magnesium. B12 shots may help also.

Jane,
I wish you a Very Happy Belated Birthday.

I am sorry you had to have your infusion on your B-Day, that stinks. It's great that you have a terrific support system, your husband and dear friend too. That helps. I hope you take it easy on your work trip on Tuesday.

Don't overdo things, if you can rest once in awhile, that helps too. I hope you get some sleep and have a nice safe business trip.

aw, how sweet! Thanks!