CIDP survey – odd relapse pattern, weakness, exercise effects – anybody else??

    • December 1, 2018 at 1:55 am

      I have a few questions for the CIDP gang out there. I’m a new member as of almost 5 months ago now. I’ve got a few things that seem to be somewhat unusual about my particular case, and very much would like to know if anyone else has had anything similar. I’ve asked these of various doctors and CIDP patients, and they have usually seemed unfamiliar with them:

      1) Odd Relapse Pattern:
      I’ve been relapsing-remitting on pattern of roughly 1 week of relapse followed by about 2 weeks of remission, regardless of any treatment. Anybody else?
      History: Almost 2 months of slow symetrical progression (feet, legs, hands, arms) leading to ER visit, CSF of 78, diagnosis of GBS, 5 days of IVIg. Much worse for 3 days, then 14 days of relief from the IVIg (but, headaches, rash, etc), then relapsed for 9 days, remission for 15 days (w/o treatment), relapsed for 8 days (started 10mg Prednisone in the middle of this), remission for 7 days, milder relapse for 5 days (increased to 20mg Prednisone), remission for 17 days, relapsing again now for 6+ days. The Prednisone doesn’t seem to be helping all that much with the current relapse – maybe 20-30% less severe symptoms at best. I have the impression now that neither the IVIg or Prednisone have done that much to help (and plenty of unpleasant side effects to hurt). It seems this thing is just going to cycle on/off whenever it damn well feels like it.
      My impression is that the vast majority of CIDP patients seem to have much longer continuous attacks, and usually get relief only from treatments?

      2) Very Odd Periodic Weakness:
      From the point that things got pretty bad (a week before ER visit and GBS diagnosis), I’ve been having odd periods of full-body weakness that feels pretty much exactly like being weak & shaky from low blood sugar. These periods generally last for hours and eating doesn’t help. I’ve gone so far as to get a test kit and check my blood sugar, but it’s almost always in the 100-110 range when I feel weak (or a few times higher not long after a meal), so low blood sugar does not seem to be the cause. The feeling seems to coincide with ongoing attacks on my nerves. I’ve thought that perhaps it could be anxiety and adrenaline causing it, but that doesn’t seem to make sense either unless the disease is somehow magnifying the effect. These episodes have varied, but 3 months later they are still occurring and actually are even more unpleasant than the tingling/twitching.
      When I explained these symptoms to one of my neurologists, he looked at me like I was crazy, told me flat out that as a medical expert it made no sense (it was pretty clear that he did not believe me), and promptly referred me to another medical center (he wanted nothing more to do with me).

      3) Exercise Effects:
      When not in remission, any exercise makes things a lot worse. For example, 5-10 minutes of lightly massaging my wife will make the tingling in my hands much stronger, progress further up my arms, and produce little muscle twitches and nerve-shock feelings. This increase can last for hours. Similar for walking or any other exercise. It seemed that some light exercise after months of very little (a couple of 10 minute light cardio sessions with some light strength training in between) actually may have ended my last and longest 17 day remission: a relapse slowly started within a matter of hours. It seems to make sense to me that exercise increases blood flow and could increase the attack on nerves.
      However, again, others I have talked to have not seemed familiar with this effect. Anyone?

      I’m very, very grateful for any feedback – thanks!

    • December 1, 2018 at 3:32 pm

      One of our forum members (Drew) polled other forum members in an attempt to produce a fairly comprehensive GBS/CIDP survey. A survey that was based on the combined experiences of our forum members, not a survey conducted by healthcare officials. You and other CIDP sufferers may find useful information in Drew’s survey. The link to the results is included in the following forum thread:

      Patients Survey Results into GBS/CIDP

      • December 14, 2018 at 5:01 am

        In 2005 I got a flu shot & a pneumonia shot. Shortly after, I experienced ascending weakness that started in my feet & progressed to complete paralysis, inability to chew & double vision. I was very close to being on a vent. For the first couple of years, numerous doctors tried numerous treatments including pheresis by itself, ivig by itself, chemo, steroids & some other drugs, but nothing kept me from relapsing. Extended hospital stays lasting weeks to mos were routine and there seemed to be no rhyme or reason to the exacerbations. My current doc got me when I was circling the drain and did some experimenting. She came up with a regime of 1 round of pheresis followed up with 1 round of IVIG within 24 hrs (the shorter the time frame the better the outcome, so I usually try to get IVIG about 6 hrs after pheresis). She also experimented with the number of days I can go between treatments without eventually ending up in the hospital and determined I need the pheresis/ivig combination about every 7-9 days. 9 days is pushing it, so I get tx on the same day every week and have not been hospitalized for an excerbation in years.

        Despite tx, I still have varying periods of weakness. I am heat sensitive and grow weak with exposure, whether it be wearing shoes/clothing that retain heat, having to many blankets on my bed, taking too hot of a shower or being out in temperatures above 72 degrees for to long. The longer the exposure, the longer the recovery takes. Exercise also causes my weakness, in part because of the body heat generated & in part because my muscles fatigue with repetitive motion. Exercise isn’t eliminated, but it’s definitely modified. Other things that seem to have adverse effects include sleep deprivation, salt, diet soda & stress. When I learned to eliminate or at least control some of the variables, the frequency of exacerbations lessoned and the full blown relapses haven’t occurred in a long time.

        That’s been my experience. I hope that addressed some of your questions.

    • December 2, 2018 at 1:10 pm

      Thanks, Jim! That’s a very interesting survey, although unfortunately it doesn’t seem to address any of my 3 questions above. Perhaps ‘survey’ was a poor word choice on my part. I’m just trying to find out if anyone has had similar symptoms, as I seem to have a rather unusual case of this rare disease. I am developing devious plans to experiment upon myself to see if exercise or diet can induce relapses, since both seem to have been involved in recent relapses (it seems that I have developed a sensitivity to Sesame that causes gut inflammation, and this coincided with a recent relapse, but doing a confirmation might well trigger another relapse – not fun).

      BTW, I’ve been on the forums a bit, and I can see that you’re a tremendously knowledgeable and helpful member. On behalf of all members, thank you for your efforts!

    • December 3, 2018 at 1:03 am

      Kenneth, Thanks for your kind words!

      My experience with the disease was that the bad antibodies produced by my GBS/CIDP would cause my symptoms to rev up, then rev down, even while taking Prednisone and having IVIg treatments. That cycling went on for a couple months, during which I was slowly becoming more and more paralyzed, including internal and autonomous muscles. It wasn’t until I had my first Plasma Exchange (PE) did the cycle stop. Within 1-2 days of PE, numbness noticeably subsided in my face and I was able to partially close my eye. Within weeks I was getting movement back in my fingers. The cycle was ended for me by PE.

      I’ve since learned that the bad antibodies were widespread in my blood. Some of them were deep in my veins and when I was given Physical Therapy, that seemed to get my muscles moving and pumping the blood. I believe some of those antibodies deep in my veins came out of hiding and were responsible for the cycling between feeling fairly stable and the sensation of a new attack.

      Afterwards, I learned that PE removes the antibodies from the blood, but it takes 2-4 PE’s to get out those antibodies hiding deep in the veins. PE does not stop the immune system from producing more bad antibodies, that’s the job of IVIg. IVIg, however, doesn’t remove the antibodies already in the blood. The two treatments tend to cancel each other out, so it’s not recommended to keep flipping back and forth on some regular basis, without giving each treatment several days to work. I think 3 PE’s over a 5-day period, followed by daily IVIg for 5 days, would be an optimal treatment for some of us who may have a high concentration of the bad antibodies in our systems.

      Perhaps you have too many active bad antibodies in your blood and they are contributing to your cycle of relapse/remission? Have you considered PE? What do your doctors think?

      Another possible contributing factor would be if you contracted the disease thanks to the Campylobacter bacteria; and, it’s still active in your gut. Maybe your sensitivity to Sesame is somehow related to a bacterial infection?

      Perhaps the following publication might offer some insight into your symptoms and their treatment:

    • December 5, 2018 at 7:58 pm

      The cycling is interesting – as if some part of the immune system figures out something is wrong and suppresses the auto-attack for a while. I understand that antibodies have a “half-life” of around 3 weeks, so they can survive for months. I’ve considered PE, but it seems a bit extreme for my mild case. More IVIg treatments would probably require another spinal to show high protein in CSF and Nerve Conduction tests showing damage, and an official CIDP diagnosis (don’t have that yet, and don’t want it if I can avoid it). Also, IVIg made me a lot worse for a few days, and gave me a painful rash, headaches, etc. My last relapse was very unpleasant, but didn’t leave me with much leg weakness this time (can’t do that much exercise before I get weak, but that gets better each day). So, the plan (just saw my neuro again) is to wait another month or two to see how things go before getting more aggressive with the Prednisone or considering IVIg again or PE. That said, I like your plan of PE followed by IVIg because I think that would stand a decent chance of being a “cure” in my case.

      C. Jejuni bacteria is interesting… don’t know if it could have caused the Sesame sensitivity, but I it makes sense to me that the Sesame causing intestinal inflammation multiple times per month for several years MIGHT have caused the CIDP, indirectly. The inflammation makes the intestines more “leaky” and C. Jejuni (I eat a lot of chicken) could have leaked into my blood stream, and the LPS molecules on the bacteria (even if they’re dead) are major causes of inflammation (they are used to cause it in lab animals) and I read something online about them being suspected as a possible cause of CIDP due to similarities with molecules on the surface of nerve cells. Perhaps each time you get significant inflammation in your gut, you’re essentially “rolling the dice” and if the right numbers come up, you win CIDP as the prize. This would explain the increasing incident rate with age, although not why it drops after your 50’s. Note that taking Aspirin or eating pink grapefruit would make things worse (which I’ve done), or in my case how much Sesame I eat and what I eat it with, etc. Regardless of the cause of my CIDP, any inflammation could trigger a relapse in theory, and this indeed seemed to occur once when I consumed Sesame the last time, so now that I finally know what the culprit has been these last few years, it’s banned from my diet.

      I’ve been following a pretty strict anti-inflammatory diet for a while now, and also have been taking probiotics, eating yogurt every day, etc. However, I’m sure it’s possible that bad bacteria are still hanging around in there.

      Exercise definitely makes things a lot worse in my case when the auto-attack is active. It has also coincided with relapses at least twice (out of 5). So, I now plan to avoid any cardio whatsoever, especially when a relapse is “due”.

      HOWEVER, once I graphed out my symptoms, I have to face the facts that my cycles are rather amazingly consistent independent of treatment, diet, or exercise. I suspect that all of those things have SOME impact, but the natural cycling of my immune system probably carries about 80% of the responsibility, with those external factors only pushing the timeline around by a few days or reducing the severity (in the case of Prednisone).

    • December 27, 2018 at 6:40 pm

      For what it is worth. I describe it as the well is only so deep anymore. At my best with this disease, I “pay for” overworking my body. For instance, when I have to work 12 or so hours at work, I’m wiped out for a few days.

      That I can muster the strength and just in general, feel good enough to work 12 hours is a positive sign, but then the next couple of days, my calves are weak, I might get a bit of neuropathy in my hands, and I feel run down.

      In a perfect world, of course, I’d never work 12 hours or more and avoid the rundown feeling. Unfortunately, the job comes with the insurance that pays the crazy prices for my IVig treatments.

      So if you can, avoid overtaxing yourself. I’ve been at this for 2 years now, and at best I’ve peaked at 90% of my pre-CIDP self. Life though, doesn’t always allow you to quit at 90%. In the end, the bargain is, at least for me, I get one day to give it my all, and I have to pay in turn, with two days of feeling miserable.