Your Replies

  • February 1, 2021 at 10:46 am

    Hello everybody

    Short description about my CIDP:
    Got diagnosed with GBS in the first place in 2001 being 11y old, what 19y later turned out to be CIDP when the second wave showed up and is still here in a mild form.

    I have just recently experimented with the usage of CBD-ONLY oil and experienced following things:

    After 1 week:
    – No regular lower back pain
    – No regular headache

    After 2 weeks:
    – Numbness in feet completely vanished for the first time after 13 months straight
    – Hands not shaking anymore for the first time in 20y
    – Muscles / parts of my body which i wasn’t able to controll or wasn’t aware of it even being possible, were accessible for the first time in 19y

    After tellin my Neurologist about my findings of course he asked what I did / changed in the ScIg medication
    and I told him that the ScIG medication is the same but I added CBD Oil.
    He instantly admitted to it and encouraged me to go on with it since he admitts to the effect of CBD in generall.

    What I used:
    10% CBD Oil / <1% THC

    How i dosed it:
    2x 4 drops a day (morning/evening)

    I did not experience any “issues” during the day, when taking it in the morning.
    I drove my car and did everything without any issues, since it is legal in Switzerland anyways.
    Yes, I tested it first with walking / running / sports and can confirm that it doesn’t affect the psyche in any kind of way with this dose.

    July 30, 2020 at 7:05 pm

    250grams is what Ingot on a weight of 100kg.
    IVIG reaches its full potential after up to 2 weeks so a little patience is needed.

    I agree to Jim that IVIG’s not always THE solution but in regard to other solutions, I’ll take the plasma exchange as the last option, since it is a whole procedure and also very intense for the body.
    Corticosteroids or even Immunsupressiva could be the way to go or even a combination.

    Keep us posted and wishing you success with the IVIG treatment.

    July 13, 2020 at 7:14 am

    Hi PeteM

    “This is as good as it gets” sounds like a very lame statement in my opinion.
    The damaged nerves need time to heal and if you’re not having new episodes,
    IVIG does at least support the healing of the nerves.

    I wouldn’t agree to such a statement, if you don’t feel back on track yet.
    Whether you’re stay stable or not, is not predictable.

    Heard many different cases (like myself), where the next episode followed in many years.
    Others are dealing continuously with it.

    Don’t let doctors cut you off.
    They might have a scheme, but you are the one feeling and living with it.
    As long as you feel the need for it, go for it.

    July 13, 2020 at 7:04 am

    As frightening as it may sound – everything can trigger it, that triggers the immune system to “work”. GBS/CIDP are autoimmune diseases which are caused by an over reacting of the immune system.

    I had GBS back in 2001 and a second episode in 2019, which was then diagnosed with CIDP.
    Both times the first questions were “have you been sick”, “have you been vaccinated”, “did you have a surgery” within the past couple of weeks. Just because, basically everything that triggers your immune system to react, can cause it.

    After realizing what I am dealing with, I asked my doctor if in this case, where everything can be a trigger “every flu I get, could cause a relaps / increase of the sympthoms”? The answer was YES.

    My first experience which confirmed this, was spring season & hay fever.
    During the worst period, my sympthoms increased rapidly and lasted for as long as the season wasn’t over.

    July 13, 2020 at 6:52 am

    Due to all of my experience and what I have read throught the years, the answer is a clear NO.

    It is possible, that you feel more exhausted after the treatment – yes. This is because of the process which has been triggered in your immunesystem.

    CIDP has no specific progress. It might be, that the “boost” of the sympthoms, just overlapped the treatment. The success of the treatment should be noticeable from the 5th day on.

    One more experience I’d like to share, is the efficiency of the IVIG “makes”.
    I know a lot of people, which got “KIOVIG” and don’t notice any success from the therapy but a lot of side effects and, when compared to people, which got treated with “PRIVIGEN”.

    June 13, 2020 at 7:42 am

    Hi Richard

    Happy to hear it’s going on.
    Unfortunatelly I can’t tell you anything about Myelopathy.
    Best is to ask your doctor or to link directly with a neurologist.

    June 12, 2020 at 10:49 am

    An additional help against the bone loss that I can give you from back of my workout days is, using Omega3 (fish oil). It’s sold in form of pills, it’s very cheap and you can buy it in every drugstore.

    It strenghtens the bones, joints and kind of adds a layer around them.
    Just in a couple of weeks after taking 2 pills a day, it eliminated the cracking of my joints.

    June 12, 2020 at 10:40 am

    Hi Sandra

    Didn’t know about that honestly.
    I am very sorry to hear that!

    I’ll definitely have to look this up and inform myself about it.

    Hope you can manage it with the vitamin D3 injections to keep your condition up as long as possible.

    June 12, 2020 at 10:14 am

    Hi Richard

    It sounds like CIDP, since it can progress very slowly too.
    From my personal experience what you can test yourself is:

    – Behaviour of your conentration / momvement / balance when exposed to a lot exterior impressions
    like for example in a crowded spot. Since CIDP surpresses the response of the nerves, it might cause problems when you get a “data overflow” because the brain can’t handle the automatic “tasks” anymore.

    – Fast movements like for example jumping up or running.
    The fast movements require more concentration. Like described before, if your nerves are really surpressed, you will feel like a moment of being disconnected from your legs, because the information of your legs position where it is, can’t be given in the required time back to the brain.

    Nevertheless, a liquor testing will give evidence whether it is CIDP or not.
    It’s the only almost 100% evidence you can have, if the protein level in the liquor is increased.
    Yes, it is not a nice to do test but the better you know your enemy, the better you can fight it.

    That is all based on my personal experience with GBS / CIDP.
    Feel free to ask if you got further questions.

    June 12, 2020 at 10:07 am

    No, CIDP doesn’t do this to your bones.
    It might very well be due to the medication, but not CIDP itself.

    Worst case that can happen if untreated is, that it affects inner organs.

    As my folks use to say:
    “It is not a disease you die from, it is a disease you die with.”

    June 12, 2020 at 10:03 am

    I have to agree to Jim-LA.
    GBS proceeds differently than what you describe.
    It has a ascending phase – plateau phase – decending phase.

    From what you describe, it might be a form of CIDP, the chronical form of GBS which proceeds fluctuating.

    I’ve had GBS years ago and have been diagnosed with CIDP a couple of months ago.
    It started rapidly progressing end affected sensing, agility and strenght, which now after treating it with IVIG decreased to fluctuating sensing.

    To sort it out, there’s no way around MRI and liquor testing.
    None of it is fun but the MRI in combination with the liquor testing are a strong base to rule out a lot of neurological issues. Whatever it is, after these two tests, there will definitely be some clarity.

    June 12, 2020 at 6:34 am

    Hi Cori Puma

    No, GBS doesn’t cause nausea. The medication might, but not the disease itself.

    First of all, you need to be aware, that GBS is an autoimmune disease.
    So every kind of infection, illnes, virus or what so ever, can trigger the sympthoms again and again.
    Back when I got diagnosed with GBS with the age of 11y, my doctors kept me on antibiothics for as long as my body was stable again, to avoid any infections.

    I had GBS 18y ago and got diagnosed with CIDP half a year ago.
    I know that I have to watch out. Less is more. Don’t force her or yourself to get her back on track by a 100% as soon as possible. This disease cause is rooted deeply and needs time to recover.
    I was even suspended from sports during first and middle school, since physical exercise can trigger a relapse in early states.
    I know this is easier said than done when it comes to children but as my mother used to tell me back then “the calmer you are, the quicker it will go away”.

    If you should have any further questions, don’t hesitate to contact me.

    June 12, 2020 at 6:22 am

    Hi robing

    Also here to spread hope.
    I got diagnosed with GBS in 2001 to the extend, that I was completely paralysed and I got back on track 100%. I took me 5y of intensive physical rehab but it was worth it.

    At the end of 2019, I got diagnosed with CIDP, which put me back to the wheelchair again.
    Today, straight 7mt later, I am at 80% of my physical abilities.
    I am getting IVIG (PRIVIGEN) 80g every 2 weeks to ease the sympthoms and inflamation.

    I heard a lot of stories from different people in different ages diagnosed with CIDP and I really think, that even when IVIG is IVIG, the effect really depends on the brand.
    Here in Switzerland, the low cost version is called “KIOVIG” which causes A LOT of side effects and doesn’t help that much.
    From what I have experienced myself and heard from others so far, PRIVIGEN is in regard to side effects and efficiency very good. Of course your doctor wouldn’t agree to it, since it is basically all the same stuff but I was able to persuade a couple of people to try switching from KIOVIG and get PRIVIGEN and they went from “why am I doing this” to “please more of this”.

    June 12, 2020 at 6:05 am

    Hi Tim11

    I know I might be a bit late for “the party” and I hope you had success with the diagnosis.
    Yes, it is possible. I had GBS in 2001 and recovered fully, to then get diagnosed with CIDP in the end of 2019. 18y later. Yes, it is rare but also yes, it is possible. As PeteM already wrote, also I had to do a liqor test to confirm it, even the MRI showed first signs for a CIDP.

    Hope you’re doing well.
    I am almost 100% back on track but still recovering from it was able to find a “formula” that works for me. Receiving 80/g IVIG once every 2 weeks and still on physical rehab 2d/w.