Your Replies

  • August 15, 2017 at 7:06 pm

    I am wondering if I should get another opinion. My neurologist seems to be very knowledgeable about GBS. He told me he has two other patients currently

    A second opinion is a good idea IMO for a rare and complex condition. It certainly isnt going to hurt and may provide a different perspective on some things. Before selecting, ask the office some questions like experience with your condition and how many current patients they have…the more the better.

    August 14, 2017 at 10:16 pm

    I take vitamins, but did so “before”.

    Havent really tried any natural alternatives but am looking at anti inflammatory diets.

    Of the few others Ive met with this most had EMGs reflecting abnormal results, but there doesnt seem to be a definitive way to determine…a lot of what it isnt instead of what it is.

    August 14, 2017 at 5:17 pm

    Full blown symptoms out of nowhere late in 2015 although looking back there were indications like changes when riding exercise bike, small balance things, crawly skin sensations, some mild tingly in fingers etc. which Drs dismissed as those weird things that bodies do.

    DXed in early 2016. Not doing as good as I was the first 6 months after IG TX started, better than I was 6 months ago with significant relapse over 4 days, stable the last couple of months. Im not going to be running any races or playing a round of golf anytime soon.

    Im a tad over 18 months in and it took multiple neurologists to get a DX. Id suggest finding one with some background/experience in neuromuscular disorders.

    So I hope this is still a recovery phase because if its my new normal, its going to stink. Legs are weak and unable to generate power like used to, arms too. Some gross and fine motor skills are back, but others are still not completely right.

    Each 6 months or so IG seems to lose effectiveness and we shorten time frames between or bump up the dose. Can only do so much of that though.

    August 14, 2017 at 4:57 pm

    speaking of being wiped out and overdoing it, the main forum has intesting thread on gbs/cidp fatigue


    August 14, 2017 at 12:02 am

    U turns? Feels more like a 360 degree spin out on ice in the middle of a snow storm. LOL

    Saw improvements on day 3 of IVIG load dose which was around Feb last year. Infusions every 4 weeks until July/Aug (iirc) of that year and it wasn’t lasting as well by end of wk3/start of wk 4. Bumped dose and did OK until Jan/Feb and saw a major relapse in just 3-4 days at end of cycle. More prednisone (yuk) and switched to 2 week cycle. Did OK until June roughly and issues again so now it’s another upped dose of IVIG every 2 weeks.

    Not as good as I was the first 6 months, better than I was 6 months ago, stable the last couple of months. Im not going to be running any races or playing a round of golf anytime soon.

    Best of luck to you.

    August 13, 2017 at 11:45 pm

    CIDP DX for me. My legs (hips, knees,thighs, calves) are worst and where it started with extreme weakness and progressed with neuropathy. Before it went full blown I had noticed time on exercise bike was shorter and difficult but did not know why.

    Not hypermobile though at joints (at least as much as I understand the term joint laxity), if anything the opposite, but a similar issue of smaller movements needed much of the time. When things are really bad I get what I term “floppy foot”…not quit sure if its “drop foot” Ive read about.

    In 4 weeks my walking ability deteriorated immensely and by 7-8 I went to bed each night unsure if I would be paralyzed in the morning. Got put on steroids while still doing testing which seemed to slow things down, but saw no real improvement until put on IVIG.

    They first thought I had GBS, but after crossing the 8 week mark and getting multiple EMGs, MRIs of brain and spine, and an LP, they changed their minds to CIDP.

    August 11, 2017 at 8:02 pm

    I think you’re reasonably safe since you have had it before and have a sense for any prior reactions. AFAIK, almost all now come premixed so its a matter of inserting IV and hanging the bottle, monitoring you and changing bottles as needed.

    I get mine at infusion center. I know a couple of people getting it at home. They don’t always get the same nurse and get along better with some than others. Of course they are in your home for a few hours and Im not one to have a stranger around in my home unobserved. And it also feels like I perhaps would have the need to be a host while they are there.

    Although more convenient for napping, reading, or just wandering around, it is not for me at this time.

    August 10, 2017 at 6:23 pm

    As far as I know, whatever info they derived from my Lumbar Puncture / Cerebral spinal fluid collection, it did not go into the IG dosing consideration.

    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 7, 2017 at 8:38 pm

    Have you been on Prednisone at all? I was on it at high doses for a long time and docs decided to do a bone density scan because of that…thankfully, results came back ok for me.

    July 31, 2017 at 8:51 pm

    2016 was the first year I did not have a flu shot since…forever. Neurologist suggested to skip it which I did with no issues, although I did a lot of hand sanitizing and reducing my attendance at high population events.

    There may be no connection, but I did have a couple of vaccines, one of them for the flu, a few weeks before the CIDP showed up and kicked into full blown disease.

    July 30, 2017 at 12:35 am

    I am not seeing the certificate warning.

    However, I agree this latest web trend of softer contrast is not a good one. Smaller font and gray on gray or gray on white…no thanks. What was wrong with old school black on white. Especially if Im trying to read on my phone or tablet.

    Oh, and I only get one line at a time in the message box to reply or edit a post

    July 26, 2017 at 8:14 pm

    I used to get SOB on mild exertion pre-DX, but that seems to have calmed and other tests e.g. cardiovascular showed nothing. Not long ago my neurologist did some type of pulmonary breathing test to establish a baseline. Said my numbers were good.

    My BP dropped kind of low on day 1 of IVIG but not had any repeat of that.

    July 14, 2017 at 10:43 pm

    No nausea from IG (and Phenergan and I dont do well, but Zofran and Compazine are my friends when it does happen), but I sometimes get mild headaches/migraines. They slowed my infusion rate down a bit and told me to be especially hydrated (including with electrolyte enhancers and not just H2O) the day before, day of, and day after. I know another who gets a bag of fluids before they start their IG infusions otherwise they also get headaches.

    July 9, 2017 at 12:39 pm

    Do you mean Plasma Exchange which is the same thing as Plasmapheresis (see recent post here in forum)? Those are not the same as IVIG infusion.

    Thinking about it though, maybe it depends on the context plasma infusion was used in. I havent heard that term before, but IG is part of blood plasma and extracted from donors so I suppose IVIG could be considered a type of plasma infusion/transfusion but as mentioned, I havent heard of IVIG referred to like that. Hopefully someone more experienced will be along and clear it up.