thanks all : )
the headache is slowly but surely improving. yes the caffeine did help once i got to the point i could hold it down–i had extreme N & V with the headache–also vertigo : (
Yes Kelly I am VERY glad Dr. Dyck is suggesting an aggressive ivig approach to try to put the disease into remission. I cant wait for his report so i can get started!!! still waiting on the nerve biopsy results to finish up.
Although— I am a bit upset that my own neurologist wouldnt try the aggressive ivig without Dr dycks recommendation. I have been giving her e-mail links and podcast links to his sites which recomment this more aggressive approach for quite a while now??? Lori
Thanks all ~
Well let’s try this again. I had a whole message typed and for some reason it got lost.
Anyway, thank you all so much for your thoughts and input. Given the information you’ve shared, I think I’ll go with the one month on, one month off, rather than push it to two months off. I’m just now coming up on the end of the month off and only now experiencing a bit more fatigue and numbness. A “little” bit of trouble with balance as well, but strength and deterity seem to be holding pretty well.
I too am a bit leery (afraid, if you will) of letting it go so long that I might find myself backsliding to a place that it would be really hard to catch up again.
The thing I didn’t mention before is since the mid-’80’s I’ve also done battle with mild to very severe flare of sciatica. L-5, S-1 are in pretty lousy shape. At the moment am having a bit of trouble with that and am stretching, walking and taking Naproxin to keep it in check. When this happens it is also accompanied with a degree of numbness in legs and feet.
So-o-o-o- truthfully, I think in my heart of hearts I’ve always held out a shred of hope that this hasn’t been CIDP at all, (it’s all just been a “big mistake”), but rather just an exagerated reaction to my lousy back. I think I’ve got to stay real with myself though. So my idea of putting off the treatment longer, and longer probably has it’s roots in this little head game I’ve been playing with myself. You guys have helped me get a bit more “real” again, and I’m grateful.
Thanks again. See if I can get this one posted before I lose it.
Thanks all ~
Thanks for your responses you guys. I did do a search and found some discussions on the topic. I’ve been having a crappy time of it these past few days, so forgive my delay on this post. Think I may enter a new “vent” post myself. I’m way, way low at the moment.
thanks all ;-)
I have been fighting a bad cold and taking a lot of cold medicine. Also, all the other symptoms with this condition have been worse since I’ve been sick and I’ve been busy at work….so yes….their has been anxiety!;)
Hopefully it’ll go away as I get over this cold. However, because of the number of you that wrote and said you have it too, maybe it’s just another strange thing that happens with this illness.:( I’ll mention it to the neuro.
Thanks for the info all… just to follow up, I saw the doc today and he definitely doesn’t want to go either route for me. I’m a little discouraged, but I’m not sure if I’m just being impatient. He’s increasing me from 30mg to 40mg of prednisone, and increasing the gabapentin for the pain, up to 1800mg per day now.
This past month has been by far the worst since the onset of symptoms back in June. I’ve stopped exercising because it floors me for the next day or two. After going up and down the stairs a few times I’m spent. The doc thought the fatigue and weakness is more due to the prednisone than the cidp. I don’t know though. If you’ve had any experiences like that with prednisone please share.
thanks all ;-)
to: kelly– i am not sure about this. i know they do “something” with my stem cells before they are re-infused back into me… but i honestly don’t know more than that…
to: rhonda and ryan– wow, he’s way too young, i am so sorry. hell, we are all too young for this crap 😉 i will be happy to share all i go through– i hope for me and for others, that this thing works. it has worked for many, some at northwestern, and many more around the world. it seems a big key to success/remission is to do it sooner rather than later… i’ve had CIDP for 1.5 years now and the only drug that has worked for me is prednisone– which is both wonderful and insidiously evil, as we all know. problem is– whenever i carefully ween off of it, my CIDP comes back, simply. i say, NO! i’m done… this is no life, not for me anyway. and also– i have noticed how the pain and immobility was threatening to peel away my inner strength and resolve– almost like the disease gets comfortable, normal– like an old shoe. that realization frightened me as i do not want to be my illness. if ryan would like to talk with me, i would be happy to share with him what i am doing and what i understand about it… let me know.
to: pam– i remember talking with you before. in essence, you did the same thing i will do, minus the stem cell portion. and your story is an inspiration– i’m only sorry it wasn’t done sooner– as then you would have less impairment now. something i hope to avoid. the truth is– dealing with the progression of CIDP is time sensitive… apparently for more that one reason– firstly, to prevent permanent damage and also because when the disease is with us longer, it seems to take hold and is more resistant to remission, etc. i think your story is an important one and that you continue to share it…
to: jersey mike– thank you mike, i appreciate it. frankly, i think its the best shot on the planet at this moment in time. and yes, i looked into many other countries– be well.
thanks to limekat, kaza and tim– many warm hugs.
Thanks for the replies! I guess the fact that the reason I went to the ER is because I couldn’t walk very well might have been a GBS symptom. I had been experiencing pain along the sciatic nerve for several weeks and it just increased to the point that I couldn’t straighten out. It does make sense that the surgery caused trauma to the spinal cord and released myelin into the system triggering an immune response. I feel fortunate to have been at a great hospital with an excellent staff when it happened because I definitely believe it could have gone undiagnosed and progressed farther up my body. Thanks again for the replies! This site is a great resource for folks with this crazy syndrome!
Thanks all! I still have’t heard from the dentist although I left a message Friday night. I taught her when she was in middle school – she was a gentle soul and an A student. But I doubt if dentists know about GBS since alot of doctors don’t seem to. I am hoping it is a simple cement it back on. One thing I learned this year…..if you don’t like the answer, try another person. Piano tuner #1 said it was not worth tuning – I should sell it for parts. Piano tuner #2 said it would be no problem to tune and it was made from good wood. Had I listened to the first one, my piano would be gone. There are alot of people out there who don’t know what they are doing!!! It’s scary.
Blood pressure isn’t an issue as that’s been one of the better parts of all that’s been going on with me. BP is sooo good it’s downright dull! Humidity while it’s dried out in part outdoors? Inside has been totally consistent.
I do have a call in w/my GP’s office- who I expect is simply gonna go ‘der wha?’ and leave it at that. The problem has abated thank goodness.
I do suspect tho can’t prove that my infusion service is now using a different IG brand…this can be tricky to navigate as you all know. I am going to deal w/the most recent ‘reaction’ there as the nurse and the pharmacist have seemed overly concerned about ‘me’ of late. Well, I think they will get their earfulls? We shall see? I’ll keep you up to date should anything interesting develop.
I get a bit wonky about bloody noses as when I was a kid I had them BIG time…going to the hospital emergency room and getting my nasal passages ‘packed’. Let me tell you, it’s not a fun thing to do at 2 in the morning more than twice! But then, we all just LOOOVE emergency rooms….don’t we?
Humm, isn’t that where ALL those sick people are? On second thought…
Thanks all for the encouragement. “Old Bat” with two cats I’m praying I have the reponse you have had. MD said today I will probably need Plasmaphresis for life if I have a positive response to it. Just do not know the frequency that I’ll require.
Moving on up???????????? How long does your plasmaphresis take, told me it would be six to eight hours.
Thanks for your replies and encouragement.
I have had MGUS with the IgM spike for five years. It has never given me a problem, but the Aethena blood test showed these areas might now have some influence with the CIDP. CIDP was dx Nov 2007,
Tried keeping my feet warmer last night and it did help. They are so numb that i do not realize they are cold.
i see md on mon. hope to know more then.