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Living with Polyneuropathy CIDP, GBS, & CMT

Treatment tomorrow

Hey all.

I am back for another round of ivig this morning 14th march.

My dr told me at the end of the last lot we are going to extend my treatment to every 8 weeks, from every 6 weeks.

So I agreed and away we went… well this is week 7… good heavens I’m bad. Very weak and wobbly. Feet, which are my main issue, are super numb and painful. My hands, which are normally ok, are terrible can’t feel my left at all. They are also very weak and have dropped a lot!!!

Oh well hopefully all will go with no issues and help ease things a bit.

Hope everyone is ok…

Bazza.

Hey Bazza, I hope the treatment went well and that you are starting to feel better today!

Hi Canadian girl…

Sorry for delay. Has been a bit of a poo few days.

Treatment all done.

Hands are feeling better, still numbness but better. Legs and feet are awful still. Kept me awake last few days.

On a positive note… almost headache free during treatment.

Doesn’t sound good…I have CIDP-MGUS and IVIG didn’t help. I take 800mg of gabapentin and it controls the pain to a tolerable limit. Pray you will get some relief

Hey Bwuk, small victories eh? Hoping things turn around for you, do you have anything that helps you sleep?

Spring has finally arrived in Calgary, it is supposed to get up to 10 today! After the bitter cold winter we had, the warmth is so welcoming.

CG

Thanks Jim. Appreciate that. Ivig doesn’t make me better… it stops me getting worse so far.

Hey Canadia girl… wow as warm as that… get those shorts out hehe. How cold does your winter get?

No I don’t like to take things like that. Sleep feels forced…

My doctor suggested extending my IVIG from four weekly to six weekly “to see what happens”. I said, “let’s not!” I know I get worse the closer I get to the infusion date, and was not interested in making it longer.
I’ve found the titration rate significantly affects whether I’ll wind up with a headache. The nurses are now all over this, and all is okay (well … as okay as it can be).

This winter was particularly cold, we had 26 days below -20 (degrees Celsius that is, so -4 Fahrenheit). You would think after that cold ten degrees would feel like shorts weather!

Hey Jokhere that is good advice. And good for you for standing up for yourself.

Same with the rate. I have the drip machine set to 100. Anymore and my head is horrendous.

WOW… Now that’s flaming cold. I can’t imagine cold like that. I thought our winters were cold… def not…

Thanks CanadianGirl for the feedback.
It can be pretty hard at times when you feel that no one understands and
even the GP has to continually look up CIDP.

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Are you in the UK bud?

No … other side of the world - Australia☺