Random questions for those who have CIDP

    • August 8, 2017 at 11:47 am

      Hello everyone, I was just diagnosed last week with CIDP by my neurologist. This Friday I go in for a spinal tap to confirm the diagnosis and so insurance will pay for IVIg. In the meantime I have done my fair share of research on the subject but had a couple of random questions I couldn’t find significant answers to. Please don’t think I’m being cavalier. I’m not. It’s just that there isn’t much about CIDP that I can control so I’m choosing to focus on what I can. I’m making lemonade out of lemons.
      First, let me state that I am a 37 year old female and within the past couple of weeks I have also found out that I have a B12 deficiency. Actually I’m deficient in all B vitamins. I am still running tests to find out where the break in B is coming from so that is currently diagnosed. Oh, and this B12 deficiency has gone diagnosed for a minimum of 10+ years–long story as to how I know that. Second, I have had days where I have gone to bed crying because I wasn’t sure if I would be paralyzed in the morning but most days my suffering is minimal. It takes me a little longer to walk places. My limbs fall asleep. I’m weak. And I have small muscle spasms. But if you were looking at me you wouldn’t see anything wrong or worrisome.
      Okay so here are my questions:
      1. Do compression socks help?
      2. Can CIDP really be a B12 deficiency? It seems to me that the myelin sheath in made up of B12, B1, and B6 so if you can’t absorb those vitamins then wouldn’t your sheath become weak? How is it that neurologically CIDP presents different than a B12 deficiency?
      3. Has anyone tried lithium for CIDP? I think there are different types of lithium so the one I’m taking about occurs naturally in the body.
      4. Has anyone who is still capable of driving/walking tried to get a handicap sticker for CIDP?
      5. Does exercise/stretching actually work because it seems to make my muscles worse?
      6. If CIDP is an autoimmune disease then wouldn’t it be something genetically we have always had? If so then how is it possible to catch it in early stages? I guess that means you catch it during one of the first flare-ups?
      7. How long do IVIg treatments last? How many hours sitting? Can you walk around while you’re plugged in and do stuff? Will I be able to go to work the day following an IVIg treatment?

      Okay, I think that’s all I have for now. Thanks anyone who responds in advance.

    • jk
      August 8, 2017 at 12:27 pm

      Sorry to say, welcome to the club. Insurance approval is a tedious, ever changing set of hoops to jump through. Your medical provider will handle that. A spinal tap is not always conclusive. Other criteria may be used to suggest a diagnosis.

      Recommend you read this entire article by an expert and one of the members of the GBS-CIDP Global Medical Advisory Board Richard A. Lewis, MD.

      updated June 2 2017: http://emedicine.medscape.com/article/1172965-overview

      1. Do compression socks help?
      No, not for me.

      2. Can CIDP really be a B12 deficiency? It seems to me that the myelin sheath in made up of B12, B1, and B6 so if you can’t absorb those vitamins then wouldn’t your sheath become weak? How is it that neurologically CIDP presents different than a B12 deficiency?
      There are many forms of peripheral neuropathy. Let your physician sort out the cause and the diagnosis.

      3. Has anyone tried lithium for CIDP? I think there are different types of lithium so the one I’m taking about occurs naturally in the body.
      I have not heard of this. However, “The ALS Association is funding a major clinical trial to determine whether lithium can slow disease progression in patients in the early stages of amyotrophic lateral sclerosis (ALS), also known as Lou Gehrig’s disease.” This is a study based on changes in the brain and spinal cord, not really applicable to immune mediated myelin sheath damage.

      4. Has anyone who is still capable of driving/walking tried to get a handicap sticker for CIDP?
      You’ll have to met your state and your doctor’s criteria for Motor Vehicle disability Placards. In my case, I met the Social Security Definition of Disability first. Years later, my primary doctor agreed to issue a DMV (Department of Motor Vehicles) certificate.

      5. Does exercise/stretching actually work because it seems to make my muscles worse?
      Yes and yes. Exercise, overdone, makes things worse. You’ll have to find your own limits by trial and error. Not exercising is not an option.

      6. If CIDP is an autoimmune disease then wouldn’t it be something genetically we have always had? If so then how is it possible to catch it in early stages? I guess that means you catch it during one of the first flare-ups?
      CIDP is an acquired condition. This means you just get it. Nothing genetic about it. Genetic conditions such as Charcot-Marie Tooth and Hereditary neuropathy with liability to pressure palsy (HNPP) should be ruled out if your doctors deems it necessary. However, because they are genetic you might be aware of a family history of these problems.

      7. How long do IVIg treatments last? How many hours sitting? Can you walk around while you’re plugged in and do stuff? Will I be able to go to work the day following an IVIg treatment?
      The first, loading dose, and ongoing doses of IVIG will be determined by your doctor. The total amount of fluid is calculate on your ideal body weight (or, should be). The actual dose (how much) and rate infused are up to your doctor and varies. My first infusion was hospital based over 5 days. No, I was not allowed to walk around. On-going doses, for me, averaged 4 hours. However, every infusion total load and dose is individualized. Yes, you you should be able to return to normal activities almost immediately. However, everyone reacts differently.

      • August 8, 2017 at 1:44 pm

        Thank you JK! I went ahead and ordered some compression socks anyway–I figure they can’t make anything worse. I’m praying that my protein comes back high so I can start the treatments. My neurologist told me my treatments would be home based so that’s good. It is my understanding that with treatment (should it work and I’m hopeful that it will) that my symptoms will never get worse then they are now, but will get better. Is that true from your experience?

    • August 8, 2017 at 1:35 pm

      ***Autocorrect changed undiagnosed to diagnosed so where B12 is concerned I have yet to find why I’m deficient in it and all other B vitamins. Also for he record I don’t drink and never have.***

    • GH
      August 8, 2017 at 2:36 pm

      Compression socks (aka TED hose) are used during recovery for some reason having to do with blood clotting or edema or something. I wore them for awhile when I was recovering. Just use them if your rehab doctor or therapist recommends them.

      Take B12 if you like. It can’t hurt, but CIDP is not a vitamin deficience, it is an autoimmune disorder. The immune system attacks the myelin. If that process can be stopped, B12 may help recovert, although I don’t know whether that has been established.

      3. Take what your neurolgist prescribes. If you want to take additional supplements, ask him or her.

      4. I had a disabled parking sticker for awhile. My doctor had to sign off on it.

      5. Proper exercise is essential. Follow the recommendations of your physical therapist. This site published a set of exercises that can be done at home without equipment. You can also buy Thera-bands for not much.

      6. The etiology of CIDP is not well understood, but it is not an inherited disease in the sense that some other diseases are known to be. There may be some genetic aspect to it.

      7. Treatment varies because the presentation of the disorder varies and because response to treatment varies.

    • August 8, 2017 at 3:37 pm

      As far as IVIG, my treatments take 4-5 hours. For many years I had them done at an infusion clinic, but for the last year they have been home based. I pretend I’m on a long flight and watch TV or a movie or, more commonly, just work on my laptop. I can get up and walk around a little bit pulling the IV pole with me. I get up mainly to use the restroom or grab a snack. Depending on my dosage at the time, sometimes I’ve had to take the next day off of work due to being fatigued.

      The change from clinic-based to home-based infusion was dictated by my insurance company. Evidently, they can get the IVIG much cheaper through a mail-order supplier than they can going through a hospital. At first, I was a little nervous, but it has worked out well. An infustion nurse comes out to my house, starts the IV and stays while administering the drug. It’s really more convenient. The mail order pharmacy I’ve been working with (NuFactor) has been great and I highly recommend them.

    • JAL
      August 8, 2017 at 5:46 pm

      Told I have CIDP after years of weird symptoms and big name doctors not able to figure me out because as with others I don’t have the “book symptoms” and they didn’t want to think outside their box. I can understand them having concerns about naming what is wrong and possibly being wrong but wish they would have tried IVIG much sooner.
      I am struggling with the limited strength that I now have. Had two 5 days loads one month apart and one day maintenance one and half weeks ago. Second 5 day had great results but then a family reunion put me back as bad or worse than before treatments started. My doctor was disappointed in the result of being busy but understood the reason and started me on maintanance every three weeks. Balancing a 40-50 hours per week job into 25 hours max and not being able to keep up with normal housework, laundry and walking my two dogs is difficult and a huge life change so suddenly. I am the director of a rescue mission that my husband and I cofounded ten years ago and love my ministry to others on a daily basis. I don’t want to retire but it is difficult to keep up with things not being there.
      I have fatigue for about 4 days after treatments and then feel okay for the rest of the time until about three days before the next treatment. Is this typical? Also have more pain throughout my body after treatment. Does this mean it is making my nerves feel more? What speed are you able to do with IVIG? I can not go past 70 without getting a major headache even with steroids and or solmedro RX. Does this get easier? And one last question. Have any of you gone into remission with IVIG and for how long? (I guess that may be considered two questions in one) 😉 Thanks for listening (reading) and future responses.

    • August 8, 2017 at 11:31 pm

      going to bed not knowing if you will wake up paralyzed?

      Yup, been there, done that. Scarey stuff.

      1. Do compression socks help?
      Dont know, never tried them
      2. Can CIDP really be a B12 deficiency? It seems to me that the myelin sheath in made up of B12, B1, and B6 so if you can’t absorb those vitamins then wouldn’t your sheath become weak? How is it that neurologically CIDP presents different than a B12 deficiency?

      My B vitamin numbers are good or at least they were last time checked.

      3. Has anyone tried lithium for CIDP? I think there are different types of lithium so the one I’m taking about occurs naturally in the body.

      Li hasnt been presented to me as an option nor have I read of it.

      4. Has anyone who is still capable of driving/walking tried to get a handicap sticker for CIDP?

      Yep. Dr filled out form, I sent it in. Card arrived in mail. Renewal is next year and I expect a repeat of the process. I dont always use it but Im glad I have it on bad leg days. And you will be surprised how many people have them with all spaces filled sometimes.

      5. Does exercise/stretching actually work because it seems to make my muscles worse?

      Interested in other replies so far. Havent gotten good info from Neuro or PT. My mind says it should be useful but figuring how much to do of what and when frustrates me trying to do on my own.

      6. If CIDP is an autoimmune disease then wouldn’t it be something genetically we have always had? If so then how is it possible to catch it in early stages? I guess that means you catch it during one of the first flare-ups?

      7. How long do IVIg treatments last? How many hours sitting? Can you walk around while you’re plugged in and do stuff? Will I be able to go to work the day following an IVIg treatment?

      As mentioned, depends on your dose and infusion rate. Mine is now two days about 3 hrs each day at high dosage, but I tolerate it well so far. At lower doses I was around 4 hours on 1 day.

      Yes you can walk around and there is often an at home option as mentioned whether nurse administered or a self infused subq with pump. Some get a headache or other reactions next day, but an aspirin/Tylenol and staying hydrated lets me get around the next day most times although I sometimes feel a bit fatigued.

    • August 9, 2017 at 6:15 pm

      Thank you all for your replies. I am working with a functional nutritionist as well and I plan on getting a second and third opinion about the CIDP. It’s not that I don’t believe I have CIDP, it’s just that it all of the sudden came about in the middle of a B-complex deficiency. I find the timing strange especially since a B12 complex can cause many of the same symptoms. And again the myelin sheath is made up of B vitamins which my system can’t absorb through natural processes. If it is (or at least some of what I’m feeling) is CIDP then from what I have been reading it seems that I caught it in the early stages so that’s good. It looks like the earlier you get diagnosed the better change you have of remission with IVIg.
      Anyway, thank you for welcoming me to the family. I appreciate all of you! And I guess maybe all of us should be thankful that CIDP is a treatable disease.

    • August 9, 2017 at 6:28 pm

      I just wondering if anyone else has migraines/headaches that seem to come on later on in the day? It’s almost as if my body gets more tired as the day goes on and my headaches start.

    • JAL
      August 9, 2017 at 8:09 pm

      Cschelly- I have had headaches and migrines for years. Like clock work at 2pm during work. At first I thought it was the computer work most of the morning but then I realized after learning that I have CIDP and started treatments the headaches have lessened greatly. I do have really bad headaches and high blood pressure so I have to have the treatment very slow compared to others and then the headache is there but not crazy bad.

    • GH
      August 10, 2017 at 12:17 am

      cshelly, if your spinal test is positive, then you almost certainly have CIDP (assuming it isn’t GBS), and you will need the standard treatments regardless of what you are doing nutritionally.

    • August 10, 2017 at 3:23 pm

      Yep, getting a spinal test tomorrow. Really looking forward to it…yes, that’s sarcasm.

    • GH
      August 10, 2017 at 4:30 pm

      When I had a spinal, I asked for a sedative so I would not be nervous. They gave me something and the procedure was easy and painless.

      • August 10, 2017 at 5:15 pm

        I did the same thing. They gave me some ativan prior to the procedure. It helped a lot.

    • August 13, 2017 at 7:02 pm

      The spinal tap was fine. Not a big deal. My tests came back. There were several so I’m not sure what exactly I’m looking for. Everything was normal but lymphocytes was high and monocytes was low. What does that mean? Is lymphocytes the “protein” everyone is talking about that has to be high in the CSF?

    • August 13, 2017 at 7:24 pm

      Oh wait… found CSF total protein. It came back at 45 which I guess is the cut off of the normal range. Hoping the high lymphocytes will get insurance to pay for IVIg.