Back Again - A Bit About Me
Hi All
I'm sorta new here and sorta not. I'm a 45 year old mom in Michigan who loves to cook and play video games. I was Dx'd in 2007 with MS and had joined up and followed boards and hung out in chat room for a little bit, but once the Copaxone and steroids did their job on the first serious exacerbation, I was awesome for years. I pretty much forgot I even had MS. I even forgot my password and could not retrieve it for these forums so I had to make a new name. (I used to be GamerGirl). Since then I'd only had a few minor MS "glitches" that would go away after a steroid dose-pack and rest.
However, this recent exacerbation is different.
I've been going through sheer hell since this September. My legs got progressively weaker and more calf pain. I lost sensation below the waist and went semi-incontinent. My left foot and leg went into total numbness and drop, and my right foot drags too. My arms got shaky and it feels like my forearms and hands are going bad too. Since September I've been on steroid IVs twice and have been on and off the oral steroids, and am holding steady now at 40 mg. on a high-dose taper that i can't shake. i tried and no sooner do I stop the steroids, the MS symptoms come back so hard I can't move. I've had one trip to the ER last month when the shock of the sudden incontinence and numb legs set off a panic attack and I passed out. While in the hospital I switched Neuros since the first one was both too far from home and driving is really impossible right now, plus he wasn't good with follow-up and I had to have insulin with the steroids in the hospital (something he hadn't even considered I might need).
I feel awful about how this is effecting my family. I have a 10 year old son with autism that I just can't be there for and my husband is barely able to hold it together trying to deal with this stress. Right now I'm sitting here waiting for a call from the new Neuro about what to do about the steroid withdrawals and my total and utter dependence on such a high dose for so long. Without them, I really feel like this disease has decided it's time to kill me. I feel so horrible. I can't understand how things could go so bad so fast. I had a full summer playing outside with my kid and then no sooner does he go back to school my body decides to fall apart. My family is losing patience with me since I bounced back so easily the first time and had been so healthy with MS for so long. But now, I don't know if I'll ever get off the steroids or how damaged I'll be when I finally do.
I miss my life. I miss being a real mom to my kid. I don't care if it takes my legs, but hurting me so bad while it does is what's making me crazy. The new Neuro is trying, but there seems to be no real way to make this relapse stop. I'm sorry to be a drag, but I haven't slept in 2 days since the last taper-down was too fast and not only did the relapse come right back, I got the shaky-nausea etc. steroid withdrawals on top of the shakes from having to re-up the dose again AND the steroids make me borderline psychotic. Come on, doc - where's my call-back?
Anyone else get hit this hard this fast? And how long/how high can the steroids go on for?
I'm sorta new here and sorta not. I'm a 45 year old mom in Michigan who loves to cook and play video games. I was Dx'd in 2007 with MS and had joined up and followed boards and hung out in chat room for a little bit, but once the Copaxone and steroids did their job on the first serious exacerbation, I was awesome for years. I pretty much forgot I even had MS. I even forgot my password and could not retrieve it for these forums so I had to make a new name. (I used to be GamerGirl). Since then I'd only had a few minor MS "glitches" that would go away after a steroid dose-pack and rest.
However, this recent exacerbation is different.
I've been going through sheer hell since this September. My legs got progressively weaker and more calf pain. I lost sensation below the waist and went semi-incontinent. My left foot and leg went into total numbness and drop, and my right foot drags too. My arms got shaky and it feels like my forearms and hands are going bad too. Since September I've been on steroid IVs twice and have been on and off the oral steroids, and am holding steady now at 40 mg. on a high-dose taper that i can't shake. i tried and no sooner do I stop the steroids, the MS symptoms come back so hard I can't move. I've had one trip to the ER last month when the shock of the sudden incontinence and numb legs set off a panic attack and I passed out. While in the hospital I switched Neuros since the first one was both too far from home and driving is really impossible right now, plus he wasn't good with follow-up and I had to have insulin with the steroids in the hospital (something he hadn't even considered I might need).
I feel awful about how this is effecting my family. I have a 10 year old son with autism that I just can't be there for and my husband is barely able to hold it together trying to deal with this stress. Right now I'm sitting here waiting for a call from the new Neuro about what to do about the steroid withdrawals and my total and utter dependence on such a high dose for so long. Without them, I really feel like this disease has decided it's time to kill me. I feel so horrible. I can't understand how things could go so bad so fast. I had a full summer playing outside with my kid and then no sooner does he go back to school my body decides to fall apart. My family is losing patience with me since I bounced back so easily the first time and had been so healthy with MS for so long. But now, I don't know if I'll ever get off the steroids or how damaged I'll be when I finally do.
I miss my life. I miss being a real mom to my kid. I don't care if it takes my legs, but hurting me so bad while it does is what's making me crazy. The new Neuro is trying, but there seems to be no real way to make this relapse stop. I'm sorry to be a drag, but I haven't slept in 2 days since the last taper-down was too fast and not only did the relapse come right back, I got the shaky-nausea etc. steroid withdrawals on top of the shakes from having to re-up the dose again AND the steroids make me borderline psychotic. Come on, doc - where's my call-back?
Anyone else get hit this hard this fast? And how long/how high can the steroids go on for?
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