Hi Jane, sorry to hear about the diagnosis. Sometimes just hearing it said aloud can make it all so real. I remember when mine came. I had an MRI (just to be safe the doc said) because of headaches, dizziness, and very very mild optic neuritis.

It came back with 9 lesions. I got the call only 1 hour after I got home from the MRI and my GP called with the "I have some bad news. You have MS." I was in such shock I fainted. The doctor was leaving the next day to go on vacation so I was just dealing with strangers as I got admitted to the hospital for IV steroids for the optic neuritis.

And then of course the steroids mess with your moods and I was bawling like a baby for days. It will be 5 years next month. I've been lucky with no relapses. I hope you are too.

day 3 of roids done but it didn't go well at all. Different nurse started it and turns out she set pump to run twice as fast. It burned - a -lot then all my muscles started aching. Moved up from hand/fingers to shoulder and was getting pretty bad when I finally called the nurse to help me. (by now we have the night shift).

She swore out loud, stopped the fluid and checked my arm and pulse. Skin ice cold, painful & stiff muscles, burning pain and reddish skin. Whole hand and arm was weak as a limp dishrag- practically hung off to the side of me. Technically I could move it, but with great difficulty.

She immediately called the pharmacist, as she was taught in scholl it had to be diluted. Also said I couldn't tolerate the drug that fast; especially third day in a row in the right arm. Pharmacist said the solumedrol is causitc and should have been diluted with more volume and run at 2 hours (not 45 min-1hour straight like day nurse did). This was compounded by needing to decrease my liquids due the elctrolyte issue.

They flushed veins several times with saline, applied heated blanket, elevated my arm and kept checking my skin, capillary refill and asking me how are you doing. She also called my neuro to advise him.

Skin went back to normal color and warmed (but was still colder than left). I felt it easing up so I went home. Never got bad enough at night to call doc

I finally awoke to an improvement over last night but still aches (not pain- pain; more like morning after you worked out the first time in a long time). Pretty weak and needs a lot of breaks to re-coupe.

Sigh... guess I have to go to left arm (we were trying to avoid using it if possible). Cant use my right crutch at all, cant push w/c without going in circles (LOL) so am being fairly immobile. I AM NOT enjoying this wee setback.

Any tips? thanks

BTW- also having assorted normal roid side effects such as wirey wound up feeling, thus insomnia, etc

What fun we subject ourselves to all in the name of getting better. Great news is I can see again out of my left eye. Hooray!

I would sure as h e l l smack that stupid nurse...HARD!!!

Feel better soon.

If I agree to roids I always ask that they run them SLOW! I ask for at least 2 hours as it makes me incredibly nauseous and I dont want to deal with that. I get phelebitis really easily and pushing stuff faster makes it more likely that will happen.

You MUST be your own advocate and when you sit in the chair say "ok, let me tell you how we are going to sing this song" and if they are not willing to follow what YOUR needs are. GET UP! call your neuro and ask him to write special orders on its delivery. NO ONE should have to go what you went thru.

Warm compresses will help. Elevation will help. Resting the arm will help. squeezing a tennis ball will help. wiggling your fingers will help. NO heavy lifting with that arm for a week or so. The tissues are angry. Be on the look out for red streaks away from the IV site. The IV site may become hard, sore and tender. it may take a week or 10 days but with time it should get better.

please NEVER sit with a burning , hurting, aching IV line. it could mean it pulled out of the vein and is squirting into the surrounding tissues, and not into the vein. I would call the patient advocate and report this nurse for what she did and ask that she be RE TRAINED so that no one else has to go thru it like you did. Being careless at the end of a shift is dangerous. people have had to have limbs amputated because of caustic meds that were hung improperly or the IV pulled out and the nurse wasnt looking. You cant imagine how much they were panicked behind the scenes. They used to give Vistril IV till a woman lost her arm!

Im happy you are safe and home. rest up.

Great advice Dej...

Jane, hope you're feeling a bit better today. Take care of yourself, be real kind and gentle with yourself...and when you're up to it, take that phone and rant about that nurse!! Call your doc, call her place of employment, call the patient advocate...a squeaky wheel gets the grease, and she has to hear your wheel real loud!!

I sometimes wish I could work again as an RN after all I have learned with MS and then having my Mom in hospice. It would have made me a completely different nurse

finally done with the infusions - whew! This time it was hard on my body. We all jointly decided that y old body was under such stress from the flare that I needed my Solu-Medrol greatly diluted and run over 2 1/2 to 3 hours or more. I tolerated it much better once the team of my neuro, an nurse of 40+ years and the 'long in the tooth' hospital pharmacist came up with a cocktail recipe that worked. Going on experience & wisdom form age will beat a young, full of latest book learning person everytime! :-)

Had some bad chest tightness and scary feelings the next night but it was concentration and rate reated. Recovered from that within moments of drip stopping. That's when the team came up with my recipe (as we jokingly called it). After that, I had smooth sailing with only the usual side effects. Now that it is 36 hours since last dose I am feeling better and stronger.

Vision back for the most part, balance much improved, arm getting better each day. Just the normal recovery from a humdinger of a flare. Anyone want to take bets on how long it will take to get back to my old wobbly self LOL I can't tell you how happy we are to see the light at the end of the tunnel - literay and figuratively

*Today awoke to very swollen and painful lymph nodes, all over. Must have caught an infection. I have to call neuro anyway about electrolytes/new medication so I will ask him a about it. If it isn't one thing, it's another eh? {even have my humor back}

You are all simply a godsend and I hope you know how much your support and advice mean to me!