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Finally Treatment

In April I finally received IVIG. After 2 weeks or so I felt my body waking up. After 3 weeks my body felt more alive than it has in 5 years. Now after 2 months I feel symptoms initiating again. I called my neurologist’s, her nurse told me that it was only a one time treatment and it sounded as if the Doctor got in trouble as the insurance would not pay. I now have been abandoned after feeling SO MUCH better but I definitely feel myself going downhill. I have been going thru this for years and finally persuaded them for the IVIG and have had so much positive results . I am left without ANY path to follow . Any suggestions would be greatly appreciated Thanks Tim

The importance of stretching

I was diagnosed with CIDP in August 2023. Initially I responded amazingly well to IVIG but it didn’t last, and successive treatments had less and less effect, eventually none. I was prescribed Rituxin, but that takes “maybe 2-3 months to start working after the last dose”. So from December I was steadily getting worse, being essentially unable to move at all except for my head through January – March 2024.

I spent virtually all day sitting up in an airbed using voice command on my phone, with my knees elevated to stop me sliding down. My bum fit in the crease and the airbed prevented pressure sores. So basically “Apollo astronaut” position for my legs. At night I had to sleep partly on my side on a foam wedge because otherwise I got phlegm building up in my airway. So, bent legs again (my normal position when healthy).

I’m now recovering and trying to build muscle back – I lost about 20kg. The other problem is that my muscles and tendons shrank and need stretching out for me to stand properly upright, otherwise I’ll walk like a chimpanzee. I’ve now moved to a rehab ward where there are physiotherapists working with me every weekday, and besides, now that I can move again, I can move myself. Before that, I was in a medical ward where, starting I think in March, a physiotherapist would come every day or two for about 10 minutes of mild stretching. Later, they started doing some limb placement – propping my legs and arms with pillows in a couple of different positions that were at least different from my sitting position.

That really wasn’t enough. It would have been better to have done more stretching and limb placement earlier, for longer, and for that matter better explained to me what the reasons were. Partly it was a matter of staffing and funding – the hospital is chronically understaffed and there aren’t always people available to do much more than the basic feeding/cleaning/medicating – I was grateful just to get set up comfortably with my phone and a few meals, waiting to see if the Rituxin was really going to do anything.

Stopping IVIg Treatments

I started IVIg treatments for CIDP nine months ago. I currently receive three infusions every four weeks. It has been effective for me: before I started I needed a walker or a wheelchair to get around; I currently mainly use my two hiking poles, although I still can be a little unsteady.

I have asked my neurologist what would happen if I stopped the treatments- would I lose the gains I have made and regress or not. He is unwilling to give me a direct answer. I would like to go back to work, but the current schedule of losing one week out of every four makes it difficult. (I find it takes at least two days to recover from the fatigue.)

Does anyone have any experience stopping IVIg treatments? Did you regress or did you maintain any gains you had made?

Thanks.

Tools as adaptive aids

I have CIDP which was getting worse for some months, and now (cross fingers)
is improving, but I’ve lost a lot of muscle. So at times I’ve had to use
various aids for common tasks.

As a long-time tinkerer/creator, I have a lot of tools, clamps etc. so
naturally that’s what I think of for aids rather than something from a
specialty store. Everyone needs a force multiplier like a lever or winch
sometimes; there’s nothing to be ashamed of in using a vise instead of holding
a part in your hand to work on it.

One of my go-to tools is a pair of “groove-joint pliers”. The jaws open to a size
suitable for opening bottles, or close to virtually zero. I’ve used them to
tear pull tabs from something like yogourt containers, or pull up trousers, or open a clip that my fingers aren’t strong enough to do unaided.

Holds for moderation

My 2-week-old hopefully informative post is still stuck in moderation, most of my tests got through, and another informative post is stuck, with a couple of images that worked in testing.
Maybe my account is now blocked for excessive “spam”.

I thought I could delete my own posts, but apparently not in “General”