Well, today, i keep thinking of Murphy's law.
If it can get worse, it will.
I think that's right.
I thought I knew how it felt at this point to be weak.
I just came off another week of steroids. At this point I am worse off then I was in the beginning of the week.
So, complaint number one is I am going to seriously re think this monthly steroid thing. I am flaring when I go in but I don't think it is helping any more.
I went to bed last night exhausted, have a runny nose and head ready to explode because of the cold turkey off the steroids. My four year old was in bed with his runny nose and my nine year old kept waking me to tell me she couldn't sleep.
I get up to use the bathroom and this is where I never felt such horror.
I felt le someone hit a switch in my legs and they just went off. No warning, no indication of anything.
I just for a split second couldn't feel anything. I didn't fall thank god because I was in the bathroom.
I go to get up and the pain is unbearable and drop again. I grab the towel bar and catch myself.
I can't walk. I call my husband for my walker and am completely and utterly horrified.
So I started this off saying I thought I knew what weakness was until lt night.
I don't know why this is regressing this fast. I don't know why I need to use a wheelchair outside to get around now.
This all started only one year ago. One year and my life feels like it is over.
I feel like a shut in and am angry. I feel fat, ugly, lazy and am damn tired of smiling and having a great attitude.
I am not depressed. I am pissed off! my mind says I can do anything but my damn body is done.
I never had pain before and my right leg is killing me now.
I know you guys identify and I apologize for venting.
When I think of having to move my body, I am afraid. I don't trust it anymore. I don't know what it is going to do.
That's new and terrifying. Before this I could gauge how far I could go or which way to move so i didn't fall, but now I don't know. S rather than just laying down and scooting around on the floor, I am in bed doing nothing.
I can hear my four year old playing with his blocks in the other room and my heart is breaking.
Thanks everyone for listening. I'd not come here often anymore but when I do I know I will get support and advice from those who are "walking" in my shoes.
I had such a positive experience with IVSM this is surprising. I know not everyone does but I felt relief nearly immediately. In fact, I drove home thinking "this is the placebo affect. I COULDN'T see results that quickly."
I think if I lost my feeling in my legs, especially while on IVSM, I would think that is reason enough to go to the emergency room or I'd be sitting in front of my MSologist reception desk looking to discuss what was wrong with me. It would be urgent.
I went to my regular doctor while on IVSM when I just didn't know what was wrong with me. I didn't have a taper but it turns out that the stress on my body was so significant it was causing me to have incontinence and I even started my period a week early! My blood sugar levels were totally out of whack so they gave me instructions on what to expect (which I desperately needed before I started IVSM.)
Did they find lesions in your spinal cord? I thought they were in your brain?I don't know. I'd be pretty concerned about this experience after 5 months of treatments and being on a DMD. This would seem like this treatment plan wasn't helping and maybe there is something else going on.... I am sorry, I don't want to freak you out but it just seems like there is something more going on here. I'd be 2nd guessing my dx as I do already. lol ~ That's just me.
I hope they can figure this out soon and bring you relief. My prayers are with you.
This is my fourth IVSM and the neuro said that sometimes it works better than others. I think I am going to sit out the steroids from now on.
I have all these problems regardless so that's that.
I have brain lesions. No spinal. The neuro said "not yet."
Thanks everyone. Venting is always good.
I just have to come to grips with the facts.
I need to use the chair upside and all I'd ppf the aids that are there for me.
I have to conserve energy and not do more than I can.
I was in a really bad head yesterday and I thank everyone for your support.
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