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Adjusting to disability - as a parent and as a person!

(10 Posts)
shirazy75 Thu 30-Jan-14 15:15:24

I will share my diagnosis and symptoms with you all, in case it helps anyone out there with this disease... I believe some of us experience different symptoms, but I feel most of the symptoms tend to be the same really, some CIDP sufferers have it mild and others really bad, for me I have it quite bad I feel, and it worries me really...

My problems started back early in 2013, possibly (if I really think back) late 2012... I began to have quite a lot of cramping in my legs, mostly in my left, but just ignored it really, thinking everyone suffers cramps, so get on with life... but they became more frequent, so I went to my GP, and they sent me for a DVT blood test, but thankfully that came back negative, so no more was discussed really... Then I started to notice numbing and tingling in my feet, and I was falling and stumbling quite a lot, really weird sensations... but I just carried on with every day life, working mad busy full time, being a mum, and as we know all the everyday duties... but then in September, I was out shopping for my son's birthday (we promised him a bike), and I could not walk up the steps of the store properly, so this is when I thought OK this is not normal so that's when I went back to the GP and it all took off from there really...

To cut a long story short...!!! numerous tests, blood tests, referred to Neurologist, they did their tests, had Nerve Conduction Studies and EMG, the results back from them, they suspected inflammation, Nerve issues, so they referred me for further testing to confirm a diagnosis, as to exactly what was causing my symptoms...

I was then referred to a Neuromuscular / Neurologist, he requested the following:-

Another NCS / EMG / F Wave Test - which came back with progressing
demyeliation (oops for the spelling)... He then asked me to have a Sural Nerve Biopsy, left ankle and Muscle Biopsy, left thigh, had these done in March 13, the nerve one came back fine (negative) and the muscle one, well it was reported back that they did not get enough tissue so unable to sample !!!!!!!!!!!!, but the Neurosurgeon whom actually did it, did make reference to my muscles being so thin ????

I was then asked to have a Lumbar Puncture, this came back OK, then an MRI this came back OK... Then following further examinations, and another NCS / EMG, and symptoms I was actually suffering, I was then diagnosed with CIDP...

I went from forcing myself to get around and still work, walking around on the back of my heels like a "little penguin" due to the off balance and severe pain, to using crutches, to now being wheelchair bound, it is devastating . I am unable to use the stairs, due to the extreme severe pain, muscle weakness and terrible fatigue, even when I was still forcing myself to use the stairs, without warning, my feet would just "give way" on me and I would come "stair surfing"...

Sorry this is a big post, I do apologise, but if it helps anyone out there, it is worth the read... This CIDP is still quite rare I am being told so not many people have even heard of it.

The treatments so far, have been IVIg, to episodes of that, but sadly no better, then pulsed therapy dexamethasone, should have been for 3 months, but I only had 2, because of sadly no signs of it helping and my body could not tolerate it.

I had another NCS / EMG in Dec 13, and the Neurologist whom carried it out, said yes definitely CIDP from the results and marker shown that day.

I am now awaiting my consultant to decide and see me, for him to decide the best course of treatment for me ??????

shirazy75 Thu 30-Jan-14 14:21:15

Hello to everyone, I have only just signed up to Mumsnet today (30th Jan 2014), I've been searching each and every day for help, advice and information... I myself was sadly diagnosed in April 2013, with CIDP, it is an invisible (by which I mean, nobody can physically see what we suffer) and horrible...So if I can help anyone suffering this nasty disease, then please do not hesitate to message me. Take Care everyone...

kerun786 Tue 27-Aug-13 23:20:54

Hi weegiemum i hope you dont mind me writing, just joined on this as i was reading it. I have cidp and was gob smacked when i read that your numb from under your chin. I got diagnosed with it about 2 years ago. Im 27 with 2 lil boys well they getting big now (6 & 7) who are my strengh and get me through the days. I wanted to ask if you got the numbing under the chin at the start or later. At the moment its in my legs and arms sooo does it get worse???? Hope to hear from you x

SunnyCarrie Tue 03-Jul-12 14:55:49

Message deleted by Mumsnet for breaking our Talk Guidelines. Replies may also be deleted.

weegiemum Thu 22-Mar-12 15:32:10

Butterfly- thanks for the suggestions. I'm lucky in that I hadn't been signed off by my clinical psychologist who I saw for my depression when I got ill with the CIDP so he has continued to see me fortnightly to deal with issues surrounding it. I think the rapidity of onset and permanent nature of it is something that would freak anyone out. Not helped by the fact that when I got ill I stopped eating for about 6 weeks and lost 4 stone, so everyone keeps telling me how well I look (and it is good, with the stone I had already lost I've gone from a size 26/28 to an 18/20 and that has really helped with my physio).

CMOT that must have been hard!! I have use of my arms but not my hands. I'll look up your advice to see if they can help.

I've found a good online support group which helps, but getting used to the permanence is something that I think is just going to take time!

CMOTDibbler Wed 21-Mar-12 20:41:13

Nowhere near whats happened to you, but I lost the use of my arm after an accident in 2010. With all the uncertainties about what function I would get back, its been really hard adjusting to my new body image and being restricted in what I can do.
I got some counselling from an organisation called Spokzpeople, which was brilliant. They specialise in issues around disability. Its made a big difference to my attitude to it, but has also 'let' me feel that I don't have to be positive about it all the time, and that its OK to stamp and shout too

I don't have CIDP, but I do rely on having a home help, I'm not driving and I very rarely manage to get outside the house, as I have some kind of autoimmune condition going on, and the diagnosis is ongoing.
I can relate to how you feel, although for me it's been far more gradual, and therefore not nearly so shocking or as damaging to your mental state as I imagine you must have gone through.
I would ask your GP to refer you for some Cognitive Behaviour Therapy - it's really helped me look at my situation in a better light, and to think my way around problems rather than seeing them as obstacles, and that can make all the difference to you feeling depressed or not.
It can be so horrible to go through the realisation that there is so much you can't do any more, and that you have to let someone else do it, but keeping positive has been the only way I've managed to get through. I really hope you find a way of coming to terms with it without having to resort to antidepressants and other depression treatments - but if you think they might be necessary, do discuss it with your GP.
You don't mention a DP/DH at all? Have you talked to them or your kids about it?

weegiemum Sat 17-Mar-12 12:22:02

It's probably not going to improve much, my nerves are dead sad. There are quite a lot of things which can make it manageable and stop the numbness spreading, though. I am to have fortnightly physio, 6-weekly IV treatment in hospital (I'm very lucky to live close to a major neurology research centre) and I saw the OT when I was in hospital who has referred me on to the community services, but we are moving house soon and they want to wait and see me in the new house.
I find it so sad that I have to regard things like walking upstairs as a triumph! I have a lovely "mothers help" twice a week to help with cleaning, cooking and laundry but yesterday I pretended I felt ill and went to bed rather than see her as I didn't want to need her! Silly I know!
My life has gone arse-over-tit in 3 months and I'm reeling from it!

Debs75 Sat 17-Mar-12 08:43:45

I'm sorry I don't have much advice to give you but I didn't want your post to go unanswered.
Will this last forever or is there hope you will get better in the future?
I guess I would be badgering the specialists and GP's for occupational therapist to help make you and your families life as easy as possible. If you need adaptions they can tak a while to be done so an early assessment is vital

weegiemum Sat 17-Mar-12 08:23:11

Until 9th December 2011 I was a normal, fully functional though rather overweight woman. I could walk to the station, get to the supermarket, look after my kids, do everything necessary. After a years-long battle with depression I was medication free, feeling whole and healthy and happy!

On 9th December I came down with an ear infection. It cleared up quite quickly but I didn't feel "right". On Christmas Eve I fell on the stairs, was admitted to hospital as I couldn't walk at all on 2nd January and now I am quite badly disabled with a condition called CIDP - Chronic Inflammatory Demyelinating Polyradiculoneoropathy. Basically, I have no feeling in my lower limbs (including feet and hands), or lower face. I can no longer cook, write, sew, wash on my own, look after my children or house, work, walk any distance (I have a wheelchair but due to my hands not functioning I can't wheel myself or use a powered chair), I've got a blue badge already and am waiting for my DLA to be processed but my consultant says even in this climate he's never seen a claim turned down for CIDP.

In 3 months I've gone from able-bodied to profoundly physically disabled.

Has anyone else experienced this? I can't get my head round it! Feeling very low and extremely tired!

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