I initially set up this UK group as it would be nice to connect with people on here from the UK, as I noticed there wasn’t many people on here from the UK, it would be great to help one another through this illness.
My Story
I have a 16 year old son who was diagnosed with CIDP in November 2014, the illness started off with pins & needles in his fingers & toes, he has been through so much at such a young age, MRI scans, lumber punctures, IVIG, plasma exchanges, more IVIG, nerve conductions and a nerve biopsy, he is currently taking Prednisolone but due to start taking a new medication called Azathioprine when we receive the results back from his nerve biopsy, he has been such a brave lad & so proud of him because he never complains, to top it all he is currently studying for his GCSEs, as if he hasn't got enough to think about & cope with! He is finding it hard to walk because he can't feel his toes & also finds it hard to write too. It has been so hard to watch your child from being so active playing in their local football team, doing karate, ice skating, doing their own paper round to then suddenly stopping because they are so unwell.
Hi
I I’m New to this site I also live in Staffordshie, UK. So sorry to here of your son’s condition, but I do understand what it’s like to be so fit leading a full life,to everything changing.
After nearly 3 years ,so many tests,two Neuro consultants then passed over to a Movement Specialists. After two nerve conduction test,and another one soon. I’ve been told I have Severe Small Fibre Sensory Polyneuropathy Diffuse Autonomic Neuropathy.
This affects many parts and functions of my body.
And unless you’re experiencing the debilitating conditions its really hard for people,family and friends to understand.
So it would be good to speak to other in the same position.
Hi! I live in U.K.!..had CIDP for 9yrs now…my first symtoms where the same as your sons, but gradually got worse over the years!..I have Ranauld’s in my hands which has caused my finger to paralyse…I have dropfoot in my left leg which causes my foot to drag which then causes me to trip and fall…I only have IVIG every 6weeks over the course of 2 days…which really helps me…I am sorry for your son to have this evil disease at such a young age…as the pain is unbearable…especially for a child…I to was very active, horse woman outdoors morning, noon and night… ride every day, now I can’t go near my horse as I have no balance and frightened she will knock me over as it hurts so much for me when I do fall over especially the next day as I can’t support myself when i fall as my hands, arms and legs are very weak…also fatigue…the only thing you can do with this disease it to keep fighting, the moment you let your guard down it makes you worse…i you don’t mind me asking?..does your son have tests and treatment at St Thomas’s in London…this hospital and neurological team there are amazing…sorry too sound like a hypochondriac with all my problems…mine are only bad through being diagnosed in the late stages…everyone is different…just keep telling him he can do it😁
Hi Mandy,
Thank you for your message. When I posted a year ago my son was so poorly, he could hardly walk. He had the nerve biopsy and they confirmed that it was CIDP that they were treating. A year on and on his new medication (Azathioprine), along with having IVIG every 8 weeks, he is now doing really well, the feeling started coming back in his toes and they also started weaning him off of the Prednisolone, he has gone back to a normal life riding his bike, going to College and he has just started to lean to drive. I started to worry when my son started taking this new medication but wish we started on it sooner now. His neurologist has suggested that he would like to take him off of the Azathioprine this August (2017) and continue with the IVIG but try and spread it longer than 8 weeks each time.
How is your mobility?
Helen
Hi Annette,
Thank you for your message. My son goes to the John Radcliffe Hospital in Oxford, the Neurologist there is fantastic, he really knows what he is doing and am very grateful what they have done for my son over the years. My son is now 17 and has had this illness for 3 and a half years. When I posted/set up this group a year ago my son was so poorly, he could hardly walk. He had the nerve biopsy and they confirmed that it was CIDP that they were treating.
A year on and now on his new medication (Azathioprine), along with having IVIG every 8 weeks over a course of three days, he is now doing really well, the feeling started coming back in his toes and they also started weaning him off of the Prednisolone, he has gone back to a normal life riding his bike, going to College and he has just started to lean to drive. I started to worry when my son started taking this new medication but wish we started on it sooner now. His neurologist has suggested that he would like to take him off of the Azathioprine this August (2017) and continue with the IVIG but try and spread it longer than 8 weeks each time.
I have learnt so much about this illness, if only I had a magic wand, I would stop people from suffering from it.
How are you coping?
Helen
Hi Helen, I’m glad to see you back! And really happy that your son is doing well. There is a member from Canada, @familyfive, whose daughter is in university and in the early stages of treatment. I’m wondering if what you’ve learned about the illness could help them out, too.
That’s really good news about your son. I realised after I e-mailed your post was over a year ago.
My mobility isn’t good, because of my gait over last 3 years ,it’s put extra strain on my lower back . So can’t stand or walk for more than 10 minutes without the pain and stiffness kicking in. I have to rock side to side if standing, what with that and losing balance ,you do get some funny looks from people.
There is so much going off inside my body, but only I can feel it. So people cannot fully understand it that’s why
it’s good to speak to someone that does.
Hi! hjhuggy! Glad to here your son is stable,I have been having IVIG for 6yrs now…at first it was every 3months…then it was not lasting, so it went down to 8 weeks, and the same was not lasting…now it is 6 weeks…stayed at 6 weeks for about a year now…it only really helps me with me to be able to walk! and with the balance…as soon as it starts to wear off I start going down hill…if I didn’t have IVIG I would not be able to walk at all😔I am just praying that mine stays at 6 weeks as I refuse to take oral medication because I am the type of person that suffers with side affects… plus other conditions you can get from taking oral med’s!..i already get bad side affects from IVIG which I can cope with, I am due to go in for my next infusion on the 6th Feb!..I also was diagnosed with nerve conduction…but already had it for 4yrs undiagnosed thanks to my GP and by then it was to late there was too much damage…at the moment I have a few problems so to sort out with pain in my hip due to drop foot, other then that I just take one day at a time, I think that’s all you can do with this disease…
Thank you Mandy. I have to say it wasn’t easy watching the pain he was going through, I wasn’t going to give into this illness, so I kept pushing and pushing him with his physio otherwise he would have lost the use of his legs.
Have they offered you IVIG? I am sure you would benefit from this.
My son has been having IVIG for just over a year now, every 8 weeks, I defiantly think the IVIG is working for him along with his medication. I hope yours stays at 6 weeks for you. Do you have home infusions? Our neurologist mentioned about 6 months ago that we may be able to start this but am happy going up as an outpatient as our hospital is only 20 mins away from where we live. I hope your next infusion goes really well.
Thanks so much for getting in touch and trying to connect with people with similar stories. I’ve been investigating Azathioprine. I believe that is the treatment they are looking into next. She just completed blood work to see if she would be one of the minority who react with an allergic reaction. It certainly seems like a potentially helpful next step!
Hiya, that’s no problem at all. My son started taking Azathioprine in January 2016, we started noticing a difference a couple of months on, they checked his liver function and blood count weekly for the first two months of treatment then on a three monthly basis. Luckily he responded to the drug really well. I was really worried at first because he was fast approaching his GCSE exams but all worked out well. On a positive note, he is now riding his bike and doing things that he did before he became ill, he is also learning to drive too. I really hope things work out well for your daughter. Best wishes Helen
Keep us posted as always!