Could this be a new attack?
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September 3, 2007 at 8:03 pm
I received IVIG three months ago, i was feeling better until now. I tihnk a new attack may be taking place, because i hand’t felt any weakness, tingling, numbness whatsoever in my arms. Now i am feeling some in my hands and in my arms. The first EMG showed some demyelination in my arms, but i didn’t feel anything at all in my arms, just my legs. A week ago i started having some pain and weaknes in my arms and hands. I am thinking it is one out of two options: it is either my unnoticed damaged nerves regenerating or a new attack taking place. What do you think?? I am taking mthyl b12 and other supplements to help my nerves regenerate. What do you think these new sensations in my arms are due to??? I think if it is a new attack taking place i shiuldn’t wait and take IVIG again immediatly, what do you think??
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September 3, 2007 at 9:46 pm
Monica
You may be having a new attack, especially if you are feeling weak in either
the arms or legs. Most people go three to four weeks before another IVIG
infusion; others can go longer, by months. I usually wait until I present with
weakness in my legs/arms before I request my pharmacy to schedule another
infusion. I have a script for every two weeks, but can get by with every
three weeks – it shows in having to help my leg cross over the other…then it
is time.
I would consult with your neuro first…tell him/her what you are feeling and
then he/she can make a determination.Good Luck…
Miami Girl
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September 3, 2007 at 11:36 pm
Hello Monica,
I was wondering about the way your IVIG’s were scheduled too. Was the infusion you had three months ago the first series of IVIG’s? Or have you been getting them like that for six months to a year? Some of us can’t go three months in-between infusions, that’s why you might be having problems now. Talk to your doctor and find out about having them scheduled closer together. When I was on IVIG’s, I did well with them every other week. -
September 4, 2007 at 1:29 am
Hello Monica,
I was wondering about the way your IVIG’s were scheduled too. Was the infusion you had three months ago the first series of IVIG’s? Or have you been getting them like that for six months to a year? Some of us can’t go three months in-between infusions, that’s why you might be having problems now. Talk to your doctor and find out about having them scheduled closer together. When I was on IVIG’s, I did well with them every other week.Thank you Miami girl, i am defenetly going to visit my neuro as soon as possible.
Hi Cody. My IVIG has been administered in a different way from most people here, since my cidp is mainly sensory, though i do get a little weakness i am still able to walk, hold things… So my doctor decided to prescribe IVIG to me three months ago (a year after onset, in which i had only felt pain, a bit of weakness and paraesthesias, but no important motor involvement). It was a five-day round. So the doctor told me i should get ivig as soon as i felt a new attack taking place. It is so difficult for me to dertmine wether to take it or not, because, as i told you before the only parameter i take is what i feel and it is hard to determine if what i am feeling is due to healing or to relapse. He said i may need IVIG every three months or every six. It all depended on me. Now that i’m feeling this mild sensations and weakness in my arms, i think it’s is time to get the next round (the doctor said next time will only be for three days). I wonder if it is time to take the next round now. Thank you Cody
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September 4, 2007 at 12:59 pm
Hello Monica,
I’m not a doctor, so this is just my opinion and I have both sensory and motor so my needs were different, but I think you should talk to your doctor about how to space the IVIG’s. Also talk to him/her about whether you should try a maintenance. Many of us need to stay on a maintenance series in order to keep progression under control, rather then an as needed basis. Now that you are having problems three months later, see what your doctor says about trying the IVIG’s every two months, until you find the space of time that keeps you feeling good. -
September 5, 2007 at 7:46 am
I’m not a doctor either but I think you are having a new relapse so you should have a new IVIG infusion but of course you must talk about it with your neuro first. I need my doses every two month although my neuro just told me to have it next time two weeks before the end of the second month to avoid things go too far away.
Good luck
Lourdes
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