Your Replies

  • B
    October 4, 2018 at 10:56 pm

    Thanks, I hadn’t heard of the hair dryer (I use a heating pad) or the agmatine or nitric oxide. I’ll look into those two supplements.

    October 4, 2018 at 10:54 pm

    I don’t know. My theory is that it contributes to inflammation in my body.

    October 4, 2018 at 2:54 pm

    Sorry to hear that you’re having such a difficult time. What was their thinking in ruling out CIDP?

    October 4, 2018 at 12:22 am

    Have you tried an elliptical machine? I also like the recumbent bike, but it sounds like maybe that’s not a good fit for you. Could you see if a personal trainer could help you adjust it to fit you better? I feel with these two machines I am less likely to stumble or fall. How about water aerobics or even just water walking? Another option is to see if your local gym has a “Silver Sneakers” program. Even if you don’t fit their age profile, the exercises are low impact, designed for seniors, and are conscious of balance issues.

    October 4, 2018 at 12:19 am

    If there is a concern for CIDP, other tests would include an EMG/NCS and lumbar puncture.

    October 4, 2018 at 12:17 am

    The worse flare I have had since being diagnosed corresponded with a vacation week where I consumed more alcohol than I had been previously to that week (2 glasses of wine in one evening at the max). I had already reduced consumption because increasingly smaller amounts of alcohol were causing me increasingly prominent GI issues (inflammatory response?). I’m now to the point that an ounce or two of wine causes me issues, and I suspect wine played a part in that bad flare, so I’m off the sauce unfortunately.

    October 4, 2018 at 12:06 am

    So how did the appointment go?

    June 12, 2018 at 1:16 am

    I have not heard of anger and irritability as a side effect of IVIG, although I’m no expert. Is it possible that the emotional stress of the managing the disease is causing these issues?

    March 23, 2018 at 1:07 am

    I would classify the NCS/EMG more as “uncomfortable” and “unpleasant” but not horribly painful. If you’re on this forum, then you have enough going on that the test will be worthwhile. Also, if you’re in the US, you’ll probably need NCS/EMG results in order to be approved for IVIG (if that’s the route you end up going).

    March 23, 2018 at 1:04 am

    Sorry to hear what you are going through. I hope you have some solid answers soon. Are you aware that this foundation as a page listing “Centers of Excellence” with doctors who specialize in CIDP?

    March 15, 2018 at 10:57 pm

    The reason I understand that contrast is used for a brain and spinal MRI is to look for MS lesions. Here is what the MS society says on the topic:

    “A contrast agent containing gadolinium is often injected into the vein before an individual undergoes an MRI scan. Gadolinium is used to identify areas of active inflammation that can be associated with MS. ”

    I too had some disc degeneration and was originally treated for disc issues before the problems became more widespread and full body neuro. But once I was with a neurologist and had a CIDP diagnosis, the neuro said that the disc issues were not nearly severe enough to cause the nerve issues I was having.

    It seems that that EMG/NCS could be done on all limbs. My first one was legs only, my second one three limbs. I wish it had been all, especially for insurance authorization purposes. Many insurance companies are looking for issues in a certain number of limbs and incomplete tests don’t help this (for IVIG approval). Also, CIDP is usually considered bilateral, but variants can be asymmetric and knowing what you’re dealing with would be helpful, in my opinion.

    A spinal tap can’t lead to a definite diagnosis for CIDP, but elevated proteins can contribute to a diagnosis. But 20% of CIDP patients have normal levels. The spinal tap is helpful to rule out other things too, since the CIDP diagnosis is largely one of ruling out other causes.

    My neuro didn’t even run CRP and doesn’t use it at all in my case. We run it occasionally at my request.

    My neuro has never put me on steroids and has been very against them in my case. Even though IVIG is more costly (both financial cost and time intensive), he feels IVIG is a more appropriate treatment for me than steroids. He thinks it’s safer and has less serious side effects than steroids. But steroids are cheaper and more accessible and many people do very well with them. There is one man on one of the facebook groups who’s always pointing out that he’s almost symptom-free on steroids, no IVIG.

    Totally agree about the weird sensations. I’ve had cobweb feeling, diminished sensation and the “sensation of sensation” if that makes sense. Their tests that search out complete numbness don’t really identify all of this other weird stuff going on. I try to ignore these minor sensory issues. I’m more concerned when I have weakness or when lack of sensation is affecting balance, walking, uneven surfaces, etc. I’ve even gotten to the point that my legs go numb during exercise, but if it’s not affecting balance I just kind of ignore it. It’s strange, but the motor nerves seem to be able to do their thing even if the sensory nerves are out to lunch. I just trust muscle memory, and know that if I ever fall that I need to re-evaluate. I realize that for many people this isn’t an option and their numbness is much more disabling.

    March 14, 2018 at 11:21 pm

    Was the MRI performed with and without contrast? Has anyone suggested a lumbar puncture (spinal tap)? That is typically performed during the diagnosis process for CIDP. Another test is a skin punch biopsy. Was your NCS performed on all 4 limbs? Will the next one be?

    Are you aware that this Foundation has identified Centers of Excellence with doctors who have shown an interest and competence in CIDP? Is it possible for you to be seen by one of these physicians?

    Your positive response to steroids seems to warrant further investigation to see if more is helpful. It may or may not be something you wish to be on long term, but it can be helpful as a treatment and also in diagnosis.

    March 1, 2018 at 11:12 am

    Sorry, I realized I posted the definition of IVIG here in this post when the inquiry on what IVIG is was asked in another post. I apologize for any confusion.

    I have a similar situation to GH in that my case is “atypical”. But I have a constellation of symptoms that are not explained by anything else, I respond positively to IVIG and my symptoms often increase before the next dose. So whatever we call it, IVIG works.

    I understand that these diseases and all of the variants are likely a spectrum and not one distinct disease. My opinion is that additional variants will continue to be defined over time and many of us “atypical” folks may find a variant home.

    I also agree that the quality of discussions on this forum are substantive and informative. There are a couple of great members (GH, JK) that know their stuff and do a lot of research. The facebook forums do have a social aspect, but there are knowledgeable people on there too and a lot of useful information is shared.

    February 27, 2018 at 10:32 am

    Terry S., if you are looking for a larger, more active forum, there are a few CIDP/GBS closed groups on facebook.

    February 26, 2018 at 11:56 pm

    I am pasting this from another part of this website. This is one of the most common forms of treatment for CIDP.

    “High dose Intravenous Immune Globulins (IVIG) is the only drug that has FDA, Canadian, and European approval for treatment of CIDP. IVIG contains naturally occurring antibodies obtained from healthy volunteers. IVIG is given through a vein over the course of several hours. Newer preparations of higher concentrations that can be given under the skin (subcutaneous) are currently being tested in controlled trials in CIDP patients.”