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Living with Polyneuropathy CIDP, GBS, & CMT

Australians living with CIDP

Are the any Australians near the Central Coast NSW who are living with CIDP?

Hi Daryl I’m from Tamworth and have had CIDP for almost 4 years now. I’ve tried so many different meds to help me but nothing is helping me at least. I go into hospital every 2-3 months for Ketamine infusions to help settle my pain. Have you had CIDP for long?

I have been getting symptions for about the last 4 yrs. It took the symptoms to increase in pain levels for me to finally go to my gp to begin the investigations to get a diognoises. All these investigations came negative. I at last was sent to my neurologist who tested and revealed that i had CIDP AND AUTOIMMUNE syndromes…that was May 2019. I then began IVIG infusions starting November 2019 with 4 consecutive days of treatment
Then began the IVIG infusions once a month for 6 months. Which has just finished. Specialist decided on another 6 months course…just trying to push through paperwork for disability…had to stop work last may 2019 because of leg and feet pain, mind fog, issues with balance fatigue etc etc…

Every day is different…how about you…it is great to get a fellow Aussie who is just up the road…ive family in Inverell and when restrictions on travel are lifted I will probably be making a trip up there.

Regards

Darryl

Hi Darryl. Well … not exactly in NSW, but very close! I’m in Ipswich - which makes you ‘just down the road’. :grinning:. My diagnosis was in 2014 and I needed to cease work in 2018. I’ve been in hospital every four weeks since then for IVIG. Life has simply taken on a ‘new pace’ as we have adapted to my new reality.

That is really close mate, feel free to call in for a cuppa next time you are passing by…
I understand what you mean by life has taken a new pattern. I’m getting used to understanding that each day is different and the pattern of expectations change with the patterns of how i feel on each day. There are also the consists to the go for scripts, the specialist for reassessment and retesting, the visits to clinics for blood tests, the hospital visits for IVIG. And then the energy swings…just to name a few of the contributing factors that influence the patterns of life for me. It is also about finding a new identity after having to give work away. Acknologment of my new limitations and trying to accept it all and applying a positive outlook all at the same time.
How about you?

You sound like you are in a lot of pain. Have you lost any mobility?
Have you been on IVIG?
Still working?
I’ve not been able to work since last May 2019. This financial worry is huge as it means my wife will need to continue to work.
I have found having an interest outside of the pain bubble I live in has been helpful for me. I have spent many hours in the garden. I do jigsaw puzzles, crossword and sudoku I do some art…all good therapies and i find it helps get me through.
How do you fill your time?
Hope this finds you on a good day.
Cheers
Darryl

Hey Kenworth,
Just thought that I would check in to see how you are going mate.
How does Ketamine help with your CIDP pain.
How does it make you feel when you are getting your infusion.
I’ve just been on Google looking at Ketamine and it seems like there are some crazy side effects while you are on it. Hopefully it is giving you better pain relief.
Does it improve your mobility.
Do you have any out of pocket expenses.
I have finished my first six months of IVIG infusions and although my nerve conductivity retreating has shown very little or no improvement at least I haven’t gotten any worse. So me Neurologist has decided to continue IVIG for another six months so I’m hoping for a better result. In fact today is my first day of round two of six months of infusions.
Cheers mate