Against all odds

Hey,

My name is Tom, I was diagnosed with C.I.D.P in 2007, at the age of 14. I was very much an active member of society, being an avid rugby player and a First Stubbington Scout. I was always out and about, full of life. I became unwell and hid my symptoms from my family. I was falling over at school and struggling but didn't tell my parents till it really came to the crunch!! The first doctor i met regarding my symptoms did not believe me. Sadly my strength as a rugby player was a blessing, and a curse. Nevertheless, the real shame was having others bathe me and help me in the toilet...

When I was taken into hospital, i was given multiple tests and examinations. My family were informed that i potentially had a brain tumour. But, following a long date with an MRI scanner, and an EMG, my situation had become enlightened. Whilst an EMG was, as im sure many on here have experienced, one of the most painful procedures i had been given, being told an answer to the mysterious deteriation of life as i knew it, was to become the begining of the most heartbreaking and educational experiences my life could be offered.

Life was tough, and did not become easier. I was at one point experiencing daily IVIG Immunogloulin infusions, with no signs of promise being made. Like Sisyphus, it appeared my life was condemed by the gods, and the rock which i had been forever rolling and fighting with, to gain my happiness, was to begin falling and crashing down the mountain to its end, with no signs of a return.

Watching the world burn from the inside out, on the front row seat to ammargeddon, appealed to be greatly. It took a great deal of work and friendship for those feelings to become dormant. I have recently, despite having to retake a great deal of school and college work, completed a degree in philosophy.

Part of my journey entailed a great many battles with my fitness. Whilst it was humilating, having to learn to walk, run, lift pencils and coordinate my body, on multiple occassions, the drive given by those around me got me to where i am today; in remission and telling C.I.D.P where to shove itself.

I fear in all i have been through, there truely are greater evils to be overcome. I am thankful that my body responded to some form of treatment, with minimal damage other than a bruised pride, a small tremour and the potential fear towards its return.

In honour of this i am going to try give back in the best way i know how, an sadly whilst it is not for C.I.D.P i am climbing Kilimanjaro in September to provide clean water to communities in Africa.

I am here for anyone who needs help, and shall be dedicating myself to bringing it for as long as thier is air in my lungs.

Tom what an inspiration. Thanks so much for sharing this story. I am always looking for those positive stories and I know there are many out there but hard to find!!! These are the kind of things that we need to hear constantly!!!

I was also diagnosed in January and extremely active. I started with sore calves in April of 2014 then kept seeing doctor and thought it'd go away but didn't. Then in December of 2014 thru Jan 2015, the deterioration kept getting worse and I couldn't walk as well. Didn't respond to IVIG over span of 6 weeks and decided to switch to 60 MG Prednisone and it has been a month of using it and thanks to God it is working and I am walking better and feel like getting better. I hope to be like you soon in the road to recovery!! Thanks again greatly!!

Tom, this is a fantastic story, and not unlike my own although I'm 47, so a bit older than you!! What is really interesting too is where you live, as I am in Somerset in the UK and very near to Bath. I'm under consultants at Taunton and Bristol, don't know about you? Anyway, it would be great to meet up, as I too am in remission it seems, and a positive outlook and friends and family have definitely helped. It's taken me 2 years to get back on my feet, and I'm determined to keep going, no matter what it takes. I've just held a Charity event for macmillan, I had cancer too unfortunately, so I wish you every success with your brave walk, and would be happy to support you. I'm not exactly sure how to communicate with you to give you my contact details, but in the first instance, send me a message I suppose? All the best.

Tom, thanks for the inspiration. I'm curious to know what meds you were given to bring about your remission?

Proud of you, dude!

Thank you for sharing your story and your feelings! Your courage and successes despite the cruel beginnings will inspire us all. This is what this website is all about! I will remember you the next time I feel like giving it all up by remembering that setbacks are usually temporary like you demonstrated in your story. Again, thanks for the hope. COME BACK OFTEN.

Hi! I was diagnosed this January. How long did it take you, and anyone on here, to go into remission. Thanks
Ps - anyone here in Connecticut???

Diagnosed 3/3/09

remission 12/11/13

Maddy! Hello.
I started with IVIG and Prednisolone but it was rather a heavy amount 120mg daily and it didnt quite work. So i was put onto Azathioprine alongside IVIG and Prednisolone. I havent had IVIG in over 2 years and am just going on 250mg Azathioprine and 10mg of Prednisolone. it was a very slow and drawn out process to get the ballence right. I found exercise really helped, it stimulates the nerves more than anything the doctors can give you, even yoga and stretching i find give the nerves a good fighting.

Judy! Im sorry you were diagnosed, but you can beat this! I went into remission only in 7th/8th year of having it. But as im sure you will find on this site and anywhere online it effects people different :/, but that doesnt mean your any less able to fight it! Here if you need me :) and im sadly in England

and Thank you Geepster, Docmac and Ben! Whilst every inch feels like a battle its worth it. Aim for perfection and even if you dont hit it, you may still catch excellence. Im not sure whoes quote that is but its true. (dont get me wrong somedays i still want to watch the world burn xP )

hi against all odds

good to hear you done so well. i know its a hard and trying process and faith goes along way.

i have been diagnosed in 2011 and only two weeks ago i was diagnose with bipolar disorder

besides the fibromyalgia. but still i am standing strong and going on

theres so much to live for and fight for that makes it worth while. good luck for the future

God bless

Hey kraai!

Thank you for your kind words. im glad to hear your still going strong, never give in!

All the best

Tom