How do you know if nerves are healing?
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August 11, 2007 at 1:07 pm
Hello everyone. I haven’t posted for a while. Sorry for this. I’ll try to be around more often. Well, i had ivig about 3 months ago, i have felt some change in sensation (my neuropathy is mainly sensitive), now i feel some “vibration” along my nerves. My doctor says that new sensation is due to nerve repair. He told me i may need an other or other rounds of IVIG. He said it all depends on how i feel. So i truly do not know what to do. I still feel the tingling, burning, stiffing, ocasional numbness, pins and needles and other sensations. So i don’t know if that is supossed to mean my nerves are still being attacked. How do i know if the attack has been halted or if it is still taking place?. I remember once Cod Stanley mentioned her attack had been halted. So how did she find out that??? Since both nerve attacking and nerve healing sensations are very similiar, how can i distinguish one from the other?. I asked the doctor if we could make a decision based on the results of an EMG, he said sometimes even though impromovement and healing takes place, it is not shown in the EMG, so, he said, we should make a decision based mainly on what i feel. So, what do you think??? Thank you.
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August 11, 2007 at 2:16 pm
Hi Monica Lara,
Nice to hear from you again! The doc is right, progress does not always show up on ncv/emg. Besides, it has not been that long since your dx. Kevin’s 2nd ncv/emg did not show any improvement from the first, they were 6 months apart. I must mention however, as well it did not show improvement, it DID NOT SHOW WORSENING. That might be an answer that would be beneficial to you regarding halting the demylienation. On Kevin’s third ncv/emg, 10 months post dx, he had made a remarkable recovery. Most nerves speeds and velocities tested were within the normalrange. A nerve that had total block was now receiving transmission, but not yet normal.
Kevin’s original dx in September was GBS (AIDP) because he had weakness in March we went back to the doc and he suspected CIDP. We subsequently had 3 more sessions of ivig. On July’s ncv/emg study in addition to his vast improvement, the doctors felt that again they would call it AIDP. The quick repair of the nerves was indicative of how aidp would react. cidp with ivig in that short of time would only halt more damage, not allow such a huge fast recovery. My point being that if you have a ncv/emg, at least you could see if it has worsened and you could get more ivig if needed. I think Liz Cody Stanley’s situation entailed more than one ivig session, I believe she also was on steroids for a while. She is a very nice lady, pm her and I know she would be happy to help you.
When the doctors thought Kevin had cidp, the plan was to keep the treatments six weeks apart four times in a row. They felt that this would give Kevin’s body the best chance of putting out the inflamation. Kevin’s symptoms may have been not as bad as yours, or better, I do not know what all of your symptoms are. Some people get ivig every week, ten days, 3 months, everyone is different based on symptoms, that is something that you will have to learn to figure out. You are your best tool for measuring your symptoms.
If I remember, this is a huge financial burden for your family, as insurance did not pay. If ivig becomes a regular necessity, maybe your doctor could contact the ivig manufacturer and explain the situation. Maybe they would help or reduce the price?
Good Luck,
Dawn Kevies mom 😮 -
August 11, 2007 at 11:36 pm
Hello Monica,
I can only tell you what my thoughts are. It is true, my progression did stop. I have remained stable without relapsing or showing any signs of progression for almost four years now. I will not need IVIG’s or other medications ever again unless I start progressing again. I benefit from just physical therapy and exercise now. I have read and been told that the nerves CAN start to heal if the progression of CIDP is CONTROLLED, so you could be healing! But, if you still need the IVIG’s, if you still have GOOD days and BAD days, then CIDP is only being CONTROLLED, it has not yet stopped progressing. I knew I was no longer progressing because I went through two to three years without relapsing or having bad days. I am still remaining stable without IVIG’s, meaning the end of progression for me. Since I STOPPED progressing, I don’t know how it works when the progression is just being CONTROLLED, perhaps when you’ve healed enough, progression ends.
I was severly damaged, so I will be left with alot of residuals, some things will never go away. Had I been just mildly damaged, I’d probably heal almost as good as new. -
August 12, 2007 at 10:12 am
Monica…
I knew that I was healing because I began to regain my stength… I never did have any IVIG or any treatment except gabapentin for the pins and needles… Testing done about a year and a half after the original attack showed that the myelyn was about 80 – 85% healed… I still have all the residuals and I keep forgetting to ask him why… I guess the axon (can’t remember now if that is what it is called) was damaged and I don’t think that ever heals… 🙁
Aimee
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August 13, 2007 at 12:04 am
Aimee is totally correct. Once my CIDP was arrested, the only way I could tell my nerves were healing was when my arms & legs became stronger (it took months.) I also had more feeling everywhere on my body, except for much below the knees & almost none in my feet. Since your CIDP is strictly sensory, you will know if you regain more feeling. I haven’t had another EMG since I was first hospitalized in Mayo for 3 months in 2002; my feeling is that I know what I have & when I began to improve…
Pam
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