New CIDP patient with variances
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October 28, 2016 at 6:25 pm
i have a sudden on-set of a variation of CIDP. Numb/tingling legs and hands. I fell in April and that was the start of this. I’m disabled to the point of use of a walker. I have a couple questions for the community… Instead of “delemyinating” I may have “axonal”. Does anyone have a similar diagnosis? I go for another EMG on Monday to verify this. Based on Lumbar Puncture data I also don’t have enough protein in me to do IVIg treatments. (I did a Prednisone infusion treatment which had no affect.)
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October 28, 2016 at 6:41 pm
You may find these forum posts helpful:
https://forum.gbs-cidp.org/topic/new-cipd-and-central-nerves-cranial
https://forum.gbs-cidp.org/topic/axonal-guillan-barre-amanAs an alternative to IVIg, have you talked to your Dr about SCIg or PE?
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October 29, 2016 at 3:53 pm
Thanks Jim for the information. I’m very naïve about this whole situation so thanks for the links. I had a terrible neurologist who I’ve fired and my new doc seems much better, but here in Naples, FL they may have limited experience. I get another EMG next week which should identify if I have the Axonal variety. My feet are numb which extends to my knees and then I have about 35% feeling in my hands which radiates to my elbows. (I’ve been like this for 4 months so I hope it doesn’t progress further as some others have described.) Due to low protein levels apparently I won’t be able to receive IVIg treatment. I’ll ask about those other options you mentioned, SCIg or PE.
So here’s my current question: what is a good pain management approach? I get “shocks” throughout the day but they’re not that bad. But at times at night my legs feel like they’re on fire, which makes sleeping impossible. Sitting feels better than laying down when this happens, so sometimes I spend the night in my recliner (I’ve ordered an adjustable bed). I’ve been taking 200mg Lyrica 2X a day. It’s hard to quantify its effectiveness. No doctor recommended Lyrica, I had to be my own advocate and ask my pain management doc for it. Based on some comments I’ve seen in forums I went off Lyrica and tried Gabapentin. It seemed the Lyrica was more effective and Gabapentin didn’t do anything, so I went back to Lyrica. When this happens I take a Oxycontin Acetaminophen (Percocet) 7.5/325 which helps me get to sleep for a few hours. Does anyone have any other treatment suggestions and/or tips? Thanks!! -
October 29, 2016 at 8:16 pm
This website has a list of Centers of Excellence under the “Get Support” tab.
For example, and somewhat near you is: USF
http://www.health.usf.edu/medicine/neurology/faculty
Phone Information- Department Of Neurology – 813-974-3541
Go there if you are able. There are lots of causes of peripheral neuropathy. Finding a good doctor is important.
Pain relief is by trial and error. Please use caution with Narcotic pain relief. When you see your doctor ask if alpha-lipoic acid might help.
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October 30, 2016 at 12:13 am
I am a wheelchair bound paraplegic since 2008 thanks to CIDP. The CIDP gave me a bonus form of restless leg syndrome. It’s a twitching, squirmy feeling in my legs. It is not painful, but extremely irritating. It can keep me from sleeping at times. My neuro had me on Requip (Ropinirole) for my RLS but it didn’t help me and I was experiencing some of the side affects from that drug, so I went off it.
What I found that works for me is a low cost over-the-counter homeopathic item called “Restless Legs Relief” from Magnilife. This works wonders for my RLS symptoms and usually starts working in about 30 minutes after taking it. There are always some that would say this is not a medicine. But, as far as I’m concerned, if it helps remove and/or reduce RLS discomfort it IS a medicine of sorts. I take it daily and it has worked consistently for me for a few years now.
BTW, Lyrica is the med most recommended on these forums for general GBS/CIDP related pain. More info about pain here:
https://forum.gbs-cidp.org/topic/pain-and-weakness-togetherI’m also taking the ALA (1200-1800MG per day) JK recommended. I use the one here:
https://www.luckyvitamin.com/p-6120-now-foods-alpha-lipoic-acid-600-mg-120-vegetarian-capsulesYou may wish to contact a local GBS/CIDP liason for a referral to a neuro in your area:
http://www.gbs-cidp.org/wp-content/uploads/2013/10/GBS-Directory0613.pdfI hope you quickly get the help you need!
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