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.

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.

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”.

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.

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.

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.

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”.