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October 28, 2018 at 4:45 am
After 5.5 years of progressing PN in the front halves of both feet, I finally received in May 2018 a diagnosis of CIDP, and in July-October 2018 my neuro and I took some aggressive treatment (Prednisone 40/mg day, and heavy-dose IVIg for three months).
Unfortunately the progressive of my symptoms (total numbness, burning, weight bearing pain) has not been slowed by these aggressive treatments, and they have been put to a halt, and I’m now taking Mycophenalate although not with much optimism.
So I interviewed and got accepted at Mayo Clinic out of Rochester, MN. I spend the week of Dec 19 with them. My understanding is that they will “figure out what this is and if its possible how to stop it.”
If anyone wants to learn more about my Mayo journey, or, if anyone has any tips on how to prepare, please reply.
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August 24, 2018 at 2:47 pmJim-LA
Thanks for sharing your knowledge your last post gave me exactly what I needed. I now better understand the differences between SP-CIDP and CISP (they are not synonymous). I now feel even more certain that my variant is SP-CIDP. I could have spent weeks figuring that out but with your help I got there in a couple days. Very generous of you. Thanks again.
August 24, 2018 at 2:34 pmHello if you are interested in sensory related CIDP please switch over and read or converse on the the chat forum called “Anyone with Sensory Predominant CIDP?”. Its at https://forum.gbs-cidp.org/forums/topic/anyone-with-sensory-predominant-cidp/
This other forum covers the same topic and this other forum has a lot of good conversation underway. I am going to stop using this one.
August 22, 2018 at 5:55 pmDoes anyone have any clues regarding the differences between SP-CIDP and CISP? I see them both used apparently inter-changeably on this forum and in other medical literature.
I like to know these things and I will share what else I learn.
The difference between SP-CIDP and CISP may be trivial. But then again my chances for a positive outcome leapt forward when after five darn years I learned the differences between Peripheral Neuropathy and CIDP. And my chances leapt forward again in just the last three days when I learned the differences between most types of CIDP – and the rarer sensory predominant type which is the topic of this forum.
So i am curious.
SP-CIDP vs. CISP.
Anyone know any clues to their differences?
August 20, 2018 at 3:47 pmHi PikNik
Re your question about complete and constant lack of sensation:
My experience has been very similar. Over the six years and especially in the last year the numbness has become complete in my toes and front of feet. Top to bottom. Pinch as hard as you can and i wont know. Also feet are cold even in summer in winter they feel like ice cubes even under blankets.
My biggest problem though has been weight bearing pain. Even though they are completely numb if i step down on something sharp on one of my foot balls it feels like a stab. I sm not sure how the numbness and the stab co-exist. I am highly stressed walking even on carpet in bare feet. I have recently taken to wearing protectors like these nearly 24/7 -https://www.amazon.com/gp/aw/d/B00O80Y39W#immersive-view_1534793580717
Regarding my hopes for my current Prednisone + IVIg treatments:
I have to limit myself to hoping to stop the SP-CIDP progression. And the burning. I am having to accept that the numbness and the cold and the weight bearing pain will remain. My family and i are downscaling and moving to a warmer climate and a new career for me. I may come out better but after this six year chase i have to be conservative in my optimism.
Still i feel lucky i have learned how hard CIDP can hit and I am on the lucky side especially if i can stop the progression.
August 20, 2018 at 2:12 pmHi PikNik
I probably have relevant info for you. Yes i have the same utter lack of feeling although only in my upper feet.
I suggest we exchange our thoughts on the very high-momentum chat string you started elsewhere, and let this one sunset. That way we can learn and share with the bigger group you got going.
If you agree just repeat your question to me on the other Sensory Predominant chat string you got going and i will answer there.
Greg
August 20, 2018 at 2:03 pmI have apparently had sensory-predominant CIDP for six years. I studied everything i saw twelve or more docs including four neurologists. Was diagnosed as idiopathic until last month now its very very rare CIDP. As i read this chat string i realize that its even more specific snd more rare its SP-CIDP (Sensory Predominant CIDP). I also picked up on the link between SP-CIDP and Herpes. In five minutes i found the document at this link in which medical researchers believe theres a very strong causal connection between Herpes and SP-CIDP. http://www.ewg-board.eu/archiv-euromedica/archiv-euromedica-2-2014/Pages%20from%20archiv_euromedica_02_2014_maket_29_12_2014-16.pdf
I had Herpes outbreaks in my past.
Now after six years of increasing pain and numbness and as many years of exhaustive attempts – now I have a very likely answer. And I have treatments underway (Prednisone and Flebagamma).
I write all this to say: (a) thank you for your contributions to this chat string they are extremely vsluable to me; and (b) i will answer any question posed to me on this chat string to try to give back.
I know a lot about Peripheral Neuropathy. I chased through dozens of hypotheses to try to figure this out and stop my debilitating progression.
SP-CIDP i finally caught you.
August 20, 2018 at 1:19 pmPikNik77 – my story is similar to yours. After years of idiopathic recently diagnosed with CIDP. I sm on Day 20 of Prednisone and Dsy 1 of IVIg with brand Flebagamma.
I am happy to learn and share through the chat string that PikNik77 started. I will be back soon. I am open to questions.
One small thing – i wrote up my history on another chat string. Yours has more momentum so i will sunset mine and send anyone who replied over here. But if anyone wants to read my sensory-predominant hishistory it is at shttps://forum.gbs-cidp.org/forums/topic/any-knowledge-my-cidp-stayed-primarily-in-the-sensory-nerves-for-5-years/
Thanks
Greg with CIDPAugust 14, 2018 at 12:03 pmCIDPlog – thanks for taking the time to explain your case. Yes our paths have been similar I believe. Are you having any luck getting your CIDP to stop progressing? Greg with CIDP
August 13, 2018 at 2:53 amYes, my CIDP symptoms stayed primarily in my sensory nerves for the last 5 years, and contributed to the very slow CIDP diagnosis, which didn’t come until a month ago.
I had progressive nerve pain in my feet, starting in big toes and steadily moving upward (all toes, balls of feet, etc.). I tried to chase down the cause with several doctors, but the diagnosis remained Peripheral Neuropathy Idiopathic (unknown).
But over the past year, the pain and progression steepened, and numbness went all the way through the top halves of my feet. Everyday felt like there was a war in the tops of my feet! I pushed and had another EMG done about a month ago, and several of my amplitudes fell to near zero. I also lost reflexes in arms. All within 6 months. This spurred my neurologist to diagnose me with CIDP and now I’m taking Mycophenalate and Prednisone, and I’ll soon start IVIg.
I feel lucky – my muscles even in my totally numb painful toes work at 90%. The downside has been that my sensory-primary impacts made my CIDP even more difficult to diagnose.
I’m three weeks into the Prednisone 60 mg and it seems clear that the war inside my feet is no longer being waged. The pain is less. I’m optimistic for IVIg to work as well.
August 11, 2018 at 4:10 pmMy case is unusual I believe, because my CIDP built up in the top halves of my feet for 5.5 years, primarily in the sensory nerves, and then steepened recently to become too painful to easily walk. Now my largest toes and balls of feet are numb all the way through.
Started taking Prednisone three weeks ago. 60/mg day. Side effects have been pretty big – blood sugar, pressure and inability to sleep – but I think I’m adjusting.
I am 90% sure that the Prednisone has reduced the pain. It seems like there was a war in my feet for the last couple years, and it’s no longer being waged.
The numbness is still deep, but I do think I’m getting a little feeling back. I have a Rebuilder and in the past I would attach the pads to my toes and max out the volts and not feel anything. Now I feel something.
I hope this is helpful.
