New to CIDP, Cape Town, South Africa

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Hi all, I was diagnosed with CIDP on 17 October 2013, I must admit I never heard of this or do not know anyone who has been diagnosed with it. Its been some journey. If I could turn back the clock and fill In the tick boxes of the last year or so, maybe I could have diagnosed this earlier. I do not come home every day and fill this in. My numbness in my toes started a few months ago when I noticed a fly walking on them and could not feel it. Well so I thought, smoking for 36 years, paying the price, so you keep quiet. Numbness in finger tips, I am a toolmaker by trade, own my own engineering buisness 21 years, work 12-14 hours a day with my hands, paying the price for this !.

Had a bad bout of gastrointestinal 2 days before being admitted to hospital and could not walk any more. Numbness till elbows, and up to knees, chin, lips and mouth, scalp, nose tip, ears lobes, and private parts. All extremities so to say.

Doctors were convinced it was tumor in the cerebrum, sent for 2 MRI scans, and it scared the daylights out of me, not the scan but the thought of a brain operation. They were really suprised when it turned out negative. Next day tests, 2 spinal taps to rule out MS , motor nuron, very high protein count in spinal fluid, by then I was wheel chair fit, pumped full of corticosteroids 750mg drips I think. After day 3 progressed to a walker, day 6 to two crutches, sent home day 8. Many tests, 22 blood tests, 3 spinal taps, no reflexes from knee down and elbows down, computer tests on speeds of nerves below the 1, whatever that means . Diagnosed......GBS....CID

P .... Mellor Fisher Syndrome, sorry forgot to add most irritating symptom, double vision... very bad.

Now 5 weeks nearly down the road, ONE crutch, need to be very careful, can do stairs, recieved glasses with special prisms to fool brain to see one picture. Still have complete numbness in hands and feet though. Have severely sprained my right ankle at least 5 times, deep pain in bone, no feeling in flesh though. Numbness in mouth and lips a bit better. Struggle with simple things like buttons and shoe laces. On the whole, i am satisfied and thankfull as I read so many of you are in so much more severe state

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I have the best wife, children (2 boys, 28, 23), best freinds, best fellow Christians and believers, hundreds of people praying from all faiths to our Almighty God. I have the complete in full structure in all my facets of life.

My heart is at peace, I have time for so many things which have been nagging me over years, decluttering so to say. My priorities have had a 180 degree turn around.

Still on 40mg of corticosteroids every morning, starting my homeopathic meds today and weening my self of the drugs 5mg every 10 days. Will keep you posted on my progress.

Thanks that I could write to people who understand. I include you all in my prayers.

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Welcome Madmax. Glad your on the mend.

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What an uplifting post,welcome and so glad things are improving.

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Hello Madmax and welcome. This is a gr8 site that has helped me and will help you. I have learnt a lot about cidp just by reading every one's posts. Every now and then I have a moan and groan but the people here understand. I am happy for you that you are starting to feel a bit better. It sounds like you have a good Neuro . Stay safe and well. Shirl

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Hi.

I have been receiving treatment for about two years and recently had it increased from 2 days per 4 weeks to 2 days per 3 weeks. As per some of the others, I cannot say that I have experienced a radical improvement but the CIDP does appear to have slowed in its progression. As discussed with the ward staff yesterday, we cannot ascertain where the CIDP would have been at had I not received the treatment. Your testimony is an encouragement to us all, blessings, Bill

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Hi Madmax

A warm welcome to our world of CIP. I have been with CIDP since Nov 1999 and have learnt a lot which I often share with others and I wish to also support you on a personal level as I also live in Cape Town, Northern Suburbs. Pls contact me on ■■■■■■■■■■■■■■■■■■■■■ if you wish - much quicker to get to know each other. In the meantime, pls do not stress yourself as help and support is at my friendly hand Looking forward to meeting with you. Best regards - MissJones

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Hello Madmax. Your experience sounds much like mine. I was diagnoised with GBS Dec. 2011. Paralysis in my face to start was diagnoised with Bell's Palsy. Within a week I ended up in the ER with all extremeites also going numb as you did. I would recover and relapse for the next 10 months. My diagnosis is now CIDP. I am on IV steroids every 8 weeks. Physical and Occupational therapies helped very much. A year ago I could not walk up the 4 steps to my home. Now, I can live here again on my own with help from family for lawn moving and snow shoveling etc. My hands and fingers never came back well enough to do extended work with them but, again, I can now button, zip, and type for short periods. It is a journey that I am sure you will also be able to complete as well. Life is still good

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Hi Madmax,

I was diagnosed with CIDP about 8 years ago after being told I had Peripheral Neuropathy for two years. They were correct in saying I had PN but it turned out that CIDP had caused it. I have a really good Neurologist Prof Modi Head of Neurology at Wits University who has tried all the usual remedies IVIG, Steroids, anti Immune therapy and of course plenty of Lyrica. I am fortunate it has spread very slowly after the usual brisk start. I am the perfect socks and gloves man completely numb but they really do hurt. I was given the name of a pain clinic in Johannesburg and yet again another Prof. Frolich juggled all sorts of medication to relieve the pain and to a greater extent she succeeded. I went from an 8 to a 3 and now seem to hold my own at 3 with the odd breakthrough pain handled by Tramacet.

Take a look at a site called "butyoudontlooksick" it has an amazing little tory called the "spoon theory" which to me sums up CIDP and what it does to you. I hope you keep improving and am glad you have such a supportive family with this disease they are worth all the medicines we take.

All the best and hope for a pain free day.

Ronnie

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I will be in Cape Town the last week of November! I was diagnosed almost three years ago. I would live to meet for lunch and exchange experiences. @DocMac on Twitter

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Good afternoon to you from a fellow Cape Townian and CIDP person. I have also been in touch with ttredoux as you will see from one of your other communicators above.. I get IVIG treatment at Vincent Palotti Hospital every 8 weeks or so and have been getting treatment for over 4 years now. If you do organise a lunch with your friend above when he/she visits I would love to be included!!!! I live in Constantia and am pretty fortunate to be very well and the CIDP well under control but like you I have numb feet and other symptoms.

The very best of luck to you and I am sure you will soon be much better if your neurologist is as good as mine.

My address is ■■■■■■■■■■■■■■■■■■■■■■■■■■■■■■ should you wish to contact me.

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Glad that things are improving a little. God's blessings as you go this. My 22 year-old son was diagnosed with this a year ago and he has improved a lot. That is hope for the future through some of the great treatment options being tested here in the U.S.

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hi, i'm charles from nairobi kenya and was also diagnosed in 2013 with cidp. being on corticosteroids ever since and their isnt much improvement. have done alot of research on the disease , and i think the only way out is going for a stem cell transplant. their is this doctor

at the chicago 's northwestern hospital , thou his fee is a bit to much for me 125000 dollars, but if you can afford you can go and see dr burt and his team at the northwestern memorial hospital in chicago. just google cidp treatment in chicago, and check out the northwestern memorial hospital. you can give me your feedback on my e-mail address : ■■■■■■■■■■■■■■■■■■■■■■

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.Good afternoon - I am Mariette Tredoux from Durbanville, Cape Town and would love to meet with you when you visit the fairest Cape of all. I was diagnosed in Nov 1999 and have since then received IVIG (Polygam). The first 2 years were pretty hectic with little and then no results but suddenly all picked up and I came down from being treated with 10 x 400 ml Polygams to 5 x 400 ml Polygams every 4 months. The intervals gradually became shorter again and then since Feb 2013 Neuro decided to add 500 mg SoluMedrol monthly (exactly on 30th day) and alas ... the intervals stretched from 2 months to 5 months!! I also noticed that my overall strength was much better, even motor muscles were about normal strength. As Glen Merryweather said, good luck and hold on - you will soon be better if your Neurologist is as good as ours - we share at the same practice. Please keep me posted on my personal address ttredoux@telkomsa.net and I will guide you through your fears. Incidently, when I was diagnosed I was one of 3 people in Cape Town with CIDP/GBS and have since met a string of people across the Globe - I would love to have you on my CIDP address book. Keep in touch - God bless..... Mariette

DocMac said:

I will be in Cape Town the last week of November! I was diagnosed almost three years ago. I would live to meet for lunch and exchange experiences. @DocMac on Twitter