Anyone with Sensory Predominant CIDP?

This topic contains 33 replies, has 11 voices, and was last updated by  Jim-LA 6 months, 3 weeks ago.

Viewing 15 posts - 16 through 30 (of 34 total)
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  • #113877

    Twiggy
    Participant

    Hi, that’s the first time I have heard of a connection with the herpes virus and CISP. I’ve not read it in any of the literature either. CISP is extremely rare so I don’t think one can say most people. I’ve not been tested for it. I think you should be confident with your diagnosis because having a diagnosis is a big help and it’s not helpful if someone tells you you should have herpes too to fit the diagnosis. CIDP is on a wide spectrum. I had a frustrating time also getting a diagnosis. My GP had no idea my symptoms were neurological, I had to tell her that (I came to my own conclusion after talking to various people) and the neurologist she sent me to was a Parkinson’s specialist (and subsequently told me he had 12 CIDP patients) and yet insisted nothing was wrong. All the numerous blood tests kept coming back normal and astonishingly for a neurologist he told me I didn’t need any further tests. Luckily my uncle is a neurologist. He lives in Austria and when I caught up with him he couldn’t believe my then neurologist hadn’t requested NCS. It was quite a battle and I got a second opninion from another neurologist and then went and saw my neurologist again and when the NCS showed pronounced demyelination I changed neurologist.

    Regards O

    #113913

    PikNik77
    Participant

    I had my first two days of IVIG, today and yesterday. Both times took about 8 hours, not including set up, and I did really well with it. No side effects at all. I feel like my hands are more tingly than ever, but maybe that’s a good thing? Before they were just numb. I’m sore from where the tape was on my arm, but I’ve always been sensitive to adhesives. My nurses were fabulous and it wasn’t uncomfortable at all having them in my home all day. I’m excited to see what happens, and already have my next appt lined up 3 weeks out. I hope all of you are doing well. Let me know what’s up with you! 💚😊

    #114066

    viking6030
    Participant

    Hello,
    I am late to this thread but thought I would reply. I was diagnosed with GBS in 1982, and CIDP over a span from 2000-2003. I have both sensory and motor neuropathy, but the sensory neuropathy has always been most troublesome. IVIG and steroids provided a little relief, but I stopped these in 2006. An underlying condition was not discovered until 2014, and since addressing that, I have seen some unexpected improvement. I have a rare type of carnitine deficiency that is causing several problems. When I started daily supplementation with carnitine, the sensory neuropathy improved greatly, along with balance, and time to fatigue when walking, etc. Not one neurologist offered this as a potential cause, or as a possible therapy. And I saw some well respected neurologists. My point is, rare cases will many times escape good doctors, and sometimes it pays to look outside of the specialty of neurology for an answer.

    #114078

    Corrosion
    Participant

    I’m curious. How is your blood sugar? I asked My Doc, if this may be a player in my CIDP. He checked my blood work and I am High normal, just under 95 for the last 5-6 tests. He kinda inferred My A1C would be low, not border line High.

    I been receiving IVIG along with prednisone, for almost a year now. I have kinda hit a plateau. I am better than I was. But still looking for improvement.

    #114079

    PikNik77
    Participant

    Hello!

    My blood sugar is good. My fasting glucose is 91 and my A1C is 5. I’ve monitored it carefully over the years because I am overweight. It’s always been normal. My neuropathy started in 2004, around the same time I was diagnosed with Bipolar disorder and put on lamictal and wellbutrin. I’m not entirely unconvinced that there isn’t a correlation. I have seen some great improvement since starting IVIG in February. I do not take prednisone because I take lithium.

    #114081

    Corrosion
    Participant

    I got through the loading-dose okay. on my second infusion 3 weeks later. I started noticing small bumps on my forearms, shins. This was a sign that I ignored. They got a little worse and were itching pretty bad. I was afraid to say anything about a little bumps and decided I will see if it gets bad. Well the next infusion it went into high gear.

    I had to do a 3 day course of prednisone. They next tried stretching the interval to 4 weeks with a lower dose prior to my infusion, in my IV.

    I have been on that for 6 months now and am slowly getting better every month.
    I takes time and the treatment are kinda tailored to you condition and results.

    I been to 3 neurologists before finding out about CIPD. So keep informed and don’t be afraid to ask questions.

    There is a wealth of information here as well as support. Hope all goes well with you treatments! This is a long haul, but you CAN get through it!

    #114084

    Corrosion
    Participant

    Thank you for sharing!

    both my glucose My A1c, have gone up slightly, The A1C is 5.2 was 5.0 My exercise routine is really gone down hill. I need to get back on my program. The winter makes it difficult, I joined the Y, but right after had car problems and then Snow hit. So I gotta get off my duff.

    I’m pretty sure I am going back to every 3 weeks. I’m hoping that will help too. I’m also going to ask about my carnitine levels.

    Well it is nice to have a place to go and compare notes!

    Thank you
    Steve

    #114291

    Slate
    Participant

    Yes, 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.

    #114303

    Slate
    Participant

    PikNik77 – 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 CIDP

    #114305

    Slate
    Participant

    I 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.

    #114308

    PikNik77
    Participant

    Hi Greg! Thanks for commenting on my other post. I appreciate the response. I have had 9 rounds of IVIG (Gammunex-C) so far and at the very least, it seems to be holding it steady, so no progression. My last neurology appointment showed improved reflexes in my arms and legs so it must be doing something good. I cannot take steroids so I’ve not got to try it out, but I’m in no pain whatsoever so there is that. I tolerate the IVIG very well as long as I’m hydrating like crazy. Now, big question… When you say Sensory, do you have complete and constant lack of sensation? I have not been able to feel my feet and lower legs for years now, and by that I mean I could probably walk through fire and not even feel the pain. My fingers are just about the same although I register pain after a couple seconds. Like I put my hand in hot water and don’t realize it’s too hot until I end up with a burn. Are you like that as well? I also drop about every other thing I pick up. Can’t hold on to anything anymore. Very frustrating.

    #114309

    Slate
    Participant

    Hi 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.

    #114314

    Slate
    Participant

    Does 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?

    #114315

    Jim-LA
    Participant

    Hi Slate. Perhaps you will find some clues in the linked studies. CISP is a sensory form of AIDP and/or CIDP according to a study documented by The American Academy of Neurology in 2012. You can read the detailed study here:
    https://pdfs.semanticscholar.org/fc11/952797e2122cf2a0fb13f18d7378d69f03c3.pdf

    The study concluded (excerpt) ‘… CIDP patients differ from CISP patients in that their distal sensory nerves usually show evidence of demyelination, whereas in CISP patients, the pathologic process appears to be localized to the sensory roots (thickened lumbosacral nerve roots). Similar to other varieties (CIDP, MMN, DADS, Lewis-Sumner, etc.), the syndrome of CISP presented here may well be an additional phenotype in the spectrum of CIDP…’

    Another study, from Brazil in 2013, is summarized in the link below:
    https://www.ncbi.nlm.nih.gov/pubmed/23732204

    #114320

    Slate
    Participant

    Jim-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.

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