Last couple month’s gains wiped out!
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May 21, 2008 at 7:43 am
Well it didn’t take me long to relapse from aprils round of ivig….I was feeling pretty good from mid april to early mid may… Saw dr. Parry May 12th, and was feeling good, but by wednesday some slight symptoms started coming back, and I wasn’t active enough on seeking treatment until yesterday..Big mistake….I guess I was still in denial phase of cidp… I was hoping for a better outcome… From here on in, I pray I’m a lot more proactive on this stuff….I’m gonna go with the pulse steroids and hope for the best… Meanwhile, I feel like the last couple months of getting stronger and feeling better got wiped out by waiting 7 days! Don’t let this happen to you! I’ll keep you posted, on how the stuff works…deanop
I’m having another round of ivig right now, and has stopped progression of numbness/inflammation/demylination, but it sure caught me off guard as to how quick it came on… -
May 21, 2008 at 9:10 am
Dean so sorry to hear of this. Know that I have been praying for you.
Ron -
May 21, 2008 at 10:46 pm
[QUOTE=Rmcgrath]Dean so sorry to hear of this. Know that I have been praying for you.
Ron[/QUOTE]I’m new at this forum, I was dignose with CIDP last month. I started the IVIG the first week 3 times @ a low dose. The next week I had it 2 times. The first one I had on the second week, I had the worst headache that it made my face swell, and was throwing up. I don’t go back to the doctor until June 6th. But I have been in so much pain I’m afraid I will not make it. My husband also has this diease, with diabetes, high blood pressure. He could not take the IVIG.
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May 22, 2008 at 9:44 pm
I had tylenol/benedryl before each of ivig treatment…Today I had my third treatment, and I’ve got a slight headache and upset stomach…But on the bright side I feel it is really stopping what was beginning to get out of hand relapse… I’m hoping new meds, will stop this up and down stuff… I’m sorry to hear about your ordeals… What kind of pain and other issues are you having…Thanks Ron for you thinking of me.. I still can’t shake this stuff… I guess it wasn’t meant to be that I was just gonna recover bing bang boom… Oh well, I’m still fighting this stuff, and thank GOD I’ve got great support from my family and friends… I think maybe, just maybe, this new treatment will get me there.. Its just going to take a little longer…
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May 23, 2008 at 12:02 am
My whole body hurts from head to my feet, it is hard to walk, keep my balance, I also have weakness in my arms and hands. Now when I took my first three IVIG’s I felt good, only slight headache, and little pain. But the second set of IVIG’s I could have sworn I got a bad bag of medicine. This is the first week without any, which I will not get anymore until I go back to the neuro dr. I can’t stand for anyone to touch me because it hurts so bad.
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May 23, 2008 at 11:51 am
i thought also that i would wake up one am and all of this would be gone. It has been seven months and i have seen some improvement. just now beginning to realize that i will probably not return to the person i was pre-ant-mag cidp. i, also, was sursprised at how quickly i relapsed after phresis.
now am learning that my ability to walk 35 feet without the walker is something to rave about.
keep fighting, it is really the only choice we have.
thinking of you and praying for you. -
May 24, 2008 at 9:02 pm
Sorry to hear about theups and downs. I wish there were more ups for you.
CIDP is a tough road. The longer you deal with it, the more you learn. Keep up the good thoughts, I’ll be cheering for more “sunny days” for you, and a whole lot less cloudy ones.
Dick S
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May 24, 2008 at 9:49 pm
[QUOTE=blskat1]i thought also that i would wake up one am and all of this would be gone. It has been seven months and i have seen some improvement. just now beginning to realize that i will probably not return to the person i was pre-ant-mag cidp. i, also, was sursprised at how quickly i relapsed after phresis.
now am learning that my ability to walk 35 feet without the walker is something to rave about.
keep fighting, it is really the only choice we have.
thinking of you and praying for you.[/QUOTE]
Hi Beth:This past couple of weeks were especially tough for the old attitude and recovery… On the bright side I finished up with ivig #5 this morning and am dealing with a slight headache, but other than that, Bring on the healing….
I’m still fighting, cause like you, we have no choice… We have to get better (for me physically, mentally, and spiritually)… I think its great you are walking at least 35 feet.. And it sounds to me like you are determined to get better…. Thank you for helping me to think a little more positively…It sounds like our mind and spirits are willing, but our bodies just have to catch up…take care…deanop -
May 24, 2008 at 9:55 pm
[QUOTE=Dick S]Sorry to hear about theups and downs. I wish there were more ups for you.
CIDP is a tough road. The longer you deal with it, the more you learn. Keep up the good thoughts, I’ll be cheering for more “sunny days” for you, and a whole lot less cloudy ones.
Dick S[/QUOTE]
I thought I came across something that said you have golfed recently..Or post cidp….Yes sir, I have learned alot, and mostly trial and error unfortunately… But, I think instead of crying over spilled milk on my cidp, I hope this post will help someone learn from my mistakes and stay on top of things…By the way, I have golfed twice this year, scoring was pretty high to say the least, but at least it was fun being outside…deanop
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May 24, 2008 at 10:05 pm
[QUOTE=suerein]I’m new at this forum, I was dignose with CIDP last month. I started the IVIG the first week 3 times @ a low dose. The next week I had it 2 times. The first one I had on the second week, I had the worst headache that it made my face swell, and was throwing up. I don’t go back to the doctor until June 6th. But I have been in so much pain I’m afraid I will not make it. My husband also has this diease, with diabetes, high blood pressure. He could not take the IVIG.[/QUOTE]
Surerein: I have also had headaches with the ivig…This is even with pre meds tylenol/benedryl… You might want to start a new post so that some one with a lot more knowledge could help you. I had an incredible amount of pain early on, perhaps the first two months or so of this gbs/cidp stuff… For me the neuropathy pain has subsided… I never took any pain meds out of the hospital (by choice), and it made for some long painful nights and days… Alot of people take neurotin for pain… I’m wondering if you feel you are getting stronger or weaker recently? Take care and let us know…deanop -
May 26, 2008 at 5:53 pm
Thanks for your advice. I will start a new post. Well, when I was on the IVIG I felt pretty good, until the third IVIG, that is when I got the severe headache, boy is was bad.
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June 23, 2008 at 1:57 pm
[QUOTE=deanop]Well it didn’t take me long to relapse from aprils round of ivig….I was feeling pretty good from mid april to early mid may… Saw dr. Parry May 12th, and was feeling good, but by wednesday some slight symptoms started coming back, and I wasn’t active enough on seeking treatment until yesterday..Big mistake….I guess I was still in denial phase of cidp… I was hoping for a better outcome… From here on in, I pray I’m a lot more proactive on this stuff….I’m gonna go with the pulse steroids and hope for the best… Meanwhile, I feel like the last couple months of getting stronger and feeling better got wiped out by waiting 7 days! Don’t let this happen to you! I’ll keep you posted, on how the stuff works…deanop
I’m having another round of ivig right now, and has stopped progression of numbness/inflammation/demylination, but it sure caught me off guard as to how quick it came on…[/QUOTE]I was wondering where Dr. Parry is. I have seen people mentioned his name but do not know his speicality. Someone suggested I take my husband there for a second opinion.
Thanks,
Joanf -
June 23, 2008 at 11:51 pm
Joan,
Dr. Gareth Parry is located at the University of Minnesota Hospital in Minneapolis, MN. But he has been known to work with other neuros from out of the area if they contact him regarding a CIDP patient. I remeber we talked for quite awhile on the phone some time ago. If you want to talk again just PM me & I will give you my phone number or I could call you. Dr. Parry has been my neuro since Oct. of 2002 & I think he is the best. Remeber what a severe case I had? Well, I live a pretty normal life now, all things considered.
Pam -
June 24, 2008 at 8:54 am
Hi Guys.. Say Joanf. I saw Dr. Parry shortly before I made this post… I was doing pretty good that week prior, but as you can tell things went downhill, and I’ve had 2 rounds of ivig, and started on his prescription of pulse steroids. And you can read about what people think of that course of treatment… I am doing much better again, and have been posting my gains/relapse on pulse steroid post….
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