Overnight I had rolling spasms in my arms and chest. Having trouble with walking today, feet still feel like I have flippers on them and the further/longer I walk my legs feel extremely heavy and needing more effort. Arms getting weaker as day is going.
It's just frustrated at this point b/c I never know from day-to-day what symptom(s) I'm going to awaken to.
My doc said if it gets to where it interferes with daily living to call. I go back to him in about 2 wks. I've been keeping a journal of symptoms to go over with him. One good thing his office does outpatient IVSM if needed. Hopefully no more hospital stays :-)
MS Lifelines nurse told me to expect it to be 6 months before I will know if this is my new baseline or if symptoms will go away. UGH!!! So be it, I will just do what I can and adjust accordingly!
Thanks to all for your support and kind words.
Hmmm Well, when to call the doc is a good question.
I usually wait until I'm at my wits end - and I'm not so sure that's the right thing to do, but that's just me. So couple things to weight out (I'll leave my stubborn opinions out of it haha)....
-Did the doc tell you to call with new or worsening symptoms?
-Do you have a follow-up scheduled in the next months or so?
-Did the MS lifelines nurse mention you may get some of this w/Rebif 1st couple months?
If you decide to call, perhaps the neuro can identify if this is your MS, or if it's something you need to the your regular MD about. The reason I mention this is because it you say it goes on for hours at a time, typically true attacks are pretty relentless and last much more than 24 hours.
Neuro may also be able to identify if this is pseudoexacerbation or attack.
Oh, and definitely leave the nuisance thought behind. You are just learning your personal course with MS, and so is your doctor! And, it's their job to treat you :)
Welcome! This place has been a life-saver for me. Lots of knowledgeable and caring people. I hope you stick around!
I fairly new here too (dx July 2011). Still learning something new every day.
I'm hoping some more experienced members chime in here. My diagnosis flare lasted at least four months (the active flaring part), but I didn't do IVSM. It sounds to like you're still flaring.... and may want to have a conversation with your doc about how to handle it.
Am I adding correctly that your last IVSM ended in mid-March, then?
Thanks for the feedback and gracious welcome!!
Kyle - My first IV steroids (5days) was my diagnosis; second was a single IV dose 2 wks after I was released from first hospital stay. They had me do a stress test and complete cardiac workup! Hospitalist (Dr) chalked it up to esophageal spasms brought on by flare. Extremely painful.
Jane - Personally, IV steroids themselves aren't too bad. The Prednisone taper was a nightmare for me. Since I had the Solu-Medrol twice I had to taper twice, which meant a consecutive month and my blood glucose was extremely high and they put me on insulin. I'm off insulin now, thank God!
Sllowe - Since I've been diagnosed and home I have had two episodes of my arms and legs being too heavy to move (not paralyzed but felt like gravity was pushing against them) that would last for several hours. The symptoms I listed above are what I had before I went in hospital 1st time and they seem to be increasing and getting worse. That is what I'm concerned about. How far do you go before you call your Neuro or go to ER? I don't want to be a nuisance to Dr or blow things out of proportion?!?!?
Thanks again for your time :-)
Adding on a welcome to you!
Neverending loop describes it sooo well! Took me a long time to get fine motor skills back. Once I was able to put my watch on myself - I thought wow - so this can get better!
Like already mentioned - time will definitely tell the tale. 1st and 2nd year were the toughest for me when figuring what is whatand even w/the on and off issues (some just like yours) nothing was as bad as my 1st attack. So, I chalked them off to chronic problems from existing damage for me. But, that is definitely not the case for all MSers. Some of those things are definitely attack for some MSers.
Did you get a journal from the MS lifelines Nurse? If so, jot down this stuff you are going through - seems silly to track so much, but it's good to look back on and establish a baseline for you and your neuro.
Hope Rebif serves you as well as it's serving me. Nice to have you and thanks for joining us.
"Would this be considered just a steady-state for me now, flare-up or just the randomness of MS? "
Great question. I think only time will tell. I'm newly diagnosed myself and haven't done IVSM yet, so I can't add regarding experiences with it. But, I wanted to welcome you to our forum. I'm sorry to hear about the rough stuff you're going through, but I'm glad you found us.
Hi richarme Welcome to the Mystery of Life with MS :-)
Your symptom list includes some of my personal favorites. You mention that you've had two hospital stays. Was the first one in conjunction with your February diagnosis? Did the second one also involve steroids (I'm assuming IV Solumedrol?)? I'm just trying to get an idea of when you last had IV steroids.
People react differently to steroids. I was lucky to respond rather quickly. Within a week most of my major symptoms resolved. Others here will be able to provide their own response stories.
Welcome to our little myelin challenged corner of CyberSpace!