Mumsnet Talk

This will be very short as typing is hard.

I am just out of hospital after an attack of atypical variant GB syndrome. It has left me with no sensation in my legs below the knees or arms below the elbows, including hands and feet and the lower part of my face. i can do practically nothing for myself.

until 6 weeks ago i was fit and healthy physically. now im a little old housebound lady shuffling about, reliant on other people for everything. cant walk, cook, hold a book, even feel my childrens skin against my lips when i kiss them.

it could be a lot worse i know, but today its getting to me. i wondered if mn had any other peripheral neuropathy sufferers who understood a bit?

Hi weegie, I don't have any experience of peripheral neuropathy, but just wanted to say I'm thinking of you I have a muscle wasting disease which is obviously very different to your illness, but I do understand the frustration of having to rely on other people to do simple things that you would normally not even think about. It sounds really awful for you Is it something that will improve over time? <<<<hugs>>>>>

(((hugs))) Im so sorry love, I wouldnt wish it on anyone xxxxxx

Ive had PN for 5 years now (unknown cause) - hands, feet and face. It lurches from no sensation to burning so bad it makes me cry. I cant write properly any more and often 2 finger or even thumb type as typing can be really painful. Sometimes I cant stand from the burning in my feet, other times I cant feel half my foot. I fall often and drop things all the time. I often wonder what its like to not have it, I cant remember what normal is.

My son helps cooking, daughter helps me dress and does my hair when i cant manage. Asking a child to help with your bra is so humiliating.

Get a helping hand tool - they are in boots chemist for about £6, they help me dress and reach things. You must rest but you must also keep moving. Invest in a resistance band - ebay have then for a few pounds. Ive been trying antidepressants, they do help some.

Just came back to this as things have been just crazy!

I saw the neurologists and got admitted to hospital for another week, had IV immunoglobulins for 5 days (theyre the immune bit of blood and boost your own body's response to whats going on). Turns out I didn't have GB after all but some weird auto immune response which has caused my body to eat its own nerves, bit like you fallenpetal. I got physio and occupational therapy which were useful and left hospital with a wheelchair ordered which has now come and follow up arranged.

I saw my consultant again in the clinic this week and it was finally confirmed this isn't caused by cancer, but the bad news is my nerve damage in feet, legs, hands, face and tongue is permanent and the feeling isn't coming back - not ever. I'll never run my hands over a child's hair again and feel it ... Etc.

I can't wash or dress alone, stairs are hard, can only walk very short distances, can't write, can type with 1 finger, can't cook, wash up, hoover, hang up laundry, I'll never be able to drive, we're having to move house as my mobility is so impaired, I went to work this week (I'm a literacy tutor for young mums), did 90 mins and came home to sleep for 3 hours!!

I have a totally amazing dh who has washed my hair, helped me dress, laced my shoes up and 3 fantastic children of 12, 10 and 8 (we're in Scotland so even the eldest is still at primary school) who are falling over themselves to 'help' but it shouldn't be like this! Ds (middle child) was made a sixer at cubs and I couldn't sew the badge on - I cried for an hour over that one!

I'm trying to be positive but the mask often slips. It could be worse, it's me, not one of the kids for example, but it could be better! I spent the last 8 months in some serious psychotherapy to overcome longstanding depression (20 years of it!) and am free of medication, only for this to hit me!

Sorry, this is v long! If you don't mind fallenpetal I will pm you as it would be nice to chat to someone else who understands! I'm luckier than you in that I don't have the neuropathic pain, you are a saint to live with that.

Thanks for your replies!!

Hi weegie, this caught my eye and knew it would be you. Bumping for you.

My ex mother in law has this many years ago and all i can say is she did get her feeling back in most of her body it took a while but she got there ...she is 76 now and still getting about .......wish you well......

Weegiemum just wanted to say I am so sorry. I do not have PN but having also gone from very fit to significantly less able I feel for you. I totally get the cub badge thing too. It takes time for life to adjust. ((hug))

Thought I'd update a bit, it's very quiet here but I don't know where else to post.

I've had 2 rounds of IVIg treatment now, which helps both with energy and with numbness, but not with fine motor or balance skills. After it this time I immediately got a uti which has really knocked me for 6, I fell a couple of times today at work which was hard and if I'm no better tomorrow I have to go back to hospital.

We move house to a better place for me starting tomorrow - we have a one month overlap to make it all easier for me.

I'm trying very hard to get my head round if and my pasted has asked me to do sons training with the home visiting team at church about what it's like to become suddenly disabled. I'm also going to talk to the hold congregation soon about it.

I have been able to make it into work one morning z week, to pick up the kids a few times, to go to parents night. I even went to a wedding, which was amazing as I've never dealt with socialising since I got ill.

I'm trying hard to adjust, it's not easy! How do you hammer the word "permanent" into your own skull. I'm permanently disabled and that's that then!!

Didn't want your post to go unanswered. My disability was a gradual onset and always finding new things I can't do, still can't get used to thinking about it. It must be a lot harder to have it happen suddenly. It sounds like you have a great family which makes a bug difference. Hope you've found others with GB/CIDP to talk too

I had a visit from the OT yesterday, as we moved house 2 weeks ago. I am getting a rail in the shower, a second rail on the stairs and a perching stool in the kitchen.

I was in hospital for 2 days of IVIg again and realised that it's long-term - the nurses all recognised me and noticed I'd had my hair cut off, had new glasses, asked for the children etc ....

New house is a real blessing, downstairs loo is brill (I've been more than half way up the stairs twice before I remembered it was there!!) and I love having a shower cubicle I can get in and out of without needing help. It's the little things that make a difference but also remind me I'm disabled now.

I got my DLA! I know it will be reassessed soon more likely than not, but I got it with no assessment, purely on Drs letters. High rate mobility, medium rate care. It covers pay for my home help 2 days a week and taxis to work 2 days, so it's exactly right. But in my head it's a mixed blessing, so many people have intrusive assessments and have to appeal - so how stuffed am I to get it without all of that?

Just wanted to say thanks for posting. I have an unexpected disability (as a result of pregnancy) and am just adjusting to the whirlwind...or not adjusting, sometimes! But it really encourages me to know there are other parents out there, so thank you. You should have a blog