Guillain-Barre syndrome/Peripheral Neuropathy

[weegiemum]

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))) 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!!

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 :)

Thanks nse! I've been thinking about blogging this, but not sure if I'm up to scrutiny yet! I suppose I could make it what I wanted. I can't write any more, my numb fingers won't hold a pen, but I can type on a touch screen and my lovely hubby got me an iPad when I got ill, it's got a "journal" app and I use that a lot. I did a theology degree a few years ago (for fun!) and am finding exploring how disability meshes with my Christianity really interesting.

I keep thinking that there are a lot of people worse off than me, a good friend who is also a mnetter has her dd in hospital with leukaemia right now, that would be infinitely worse, if something had happened to one of my dc. And I have enough to eat, a roof over my head, a loving dh, my mental health (which I struggled with for years before this) is great now, I dont live in a repressive dictatorship, water comes out of my tap ......

That aside, what I have gone through these past 5 months is ghastly, I wouldn't wish it on my worst enemy. But I've got to look on the bright side as I'll be living with this for the rest of my life.

You are an inspiration. I also have an unexpected disability - thoracic outlet syndrome. I am nowhere as incapitated as you and have been wallowing tbh. Thinking about all the things I can't do rather than what I can and what I have.

You can get dragon naturally speaking voice recognition software for iphone and therefore I guess for ipad.

If you do decide to blog, I'll definitely follow. :)

Wow weegiemum, I was studying theology too until I got pregnant...small world. Also thinking deeply about what happens to faith when the world goes pear-shaped. Will be following you and thinking of you. Perhaps we could get disabled mums talking a bit more than they seem to currently. Maybe the church could talk about it too...?

I'm so tired today! My IVs are due on Monday and I'm very very wobbly sore and tired. So this is the weekend I invited my parents to stay!! Numbness hasn't got so bad this time though which is a great releif, so the treatment has at least arrested the spread of the CIDP for now!

Hi Weegiemum - just checking in to send support. I had a brush with GBS in Scotland last year when pregnant and spent 3 nights in neurology being observed. I was very lucky and was back on form 4 weeks later but I'll never forget the moment they told me what it was and the potential prognosis. It's a very scary thing. Keep going. Wishing you all the best.

Thanks lolly! Were you in the Southern? Great place but also pretty scary!

Glad to hear it was ok in the end!! I had kidney probs when pg that resolved after but it was frightening at the time, so I kind of get how you feel!

I was in the Western over the other side. Neurology is a scary place

Hi weegie - hugs to you and to all other disabled mums - I could'nt walk last year -( I have some peripheral neauropathy also (unexplained) gabapentin saved my life as cut the nerve tweaks) now mobile but use a w/chair, sticks around house on a good day - now husband walked as not into a disabled spouse - super! - did me a favour as I can stop apologising!
KIds give me a reason to get up every day and get on with it - focus on the can do not the can't manage it anymore or the what ifs (still lingering voice - what if can;t walk - have another fall, can't dresss et?).
hang in there ladies - non-disabled mums have'nt a clue - oh and don't do what I did which was to say no Im fine thanks when I was'nt - take help offered and ask for more - people do help just need to be given a chance and to be asked for specifics ie lifts for children, bit of childcare, cover for hospital appt etc.
I get transport to hospital now for all my appts - very handy so ask for it if you need it. Blessings.

I'm back at neurology soon - pain clinics also good idea for meds and coping - if they say no help for chronic pain then ask to go eslewhere!

Good to read. Thank you. Yes I have had dodgypins ( arthritis) for some time but about 2 years ago admitted as emergency with organ failure. After time in Intensive care and High Dependency on Kidney dialysis etc I seemed to be on the road to recovery. Came home after about 12 weeks in hospital and continued to make progress with support from District Nurse Physio etc. Then after 6 weeks all the support went away and we were on our own, my dh and my ds (age 20 on Autistic Spectrum). We manage pretty well and have done some amazing things, almost always because I want to support my son to do something, so shouldn't complain... but being human... I do. I also have numbness in extremities, I was told it was caused by some prescribed tablets I took at one point, now i begin to wonder, I also have horrific burning sensation in feet and when I sit up like now they end up burning so badly I literally don't know what to do with myself. Have had cellulitis badly recently, just completed 3rd lot of vile antibiotics and it is improved but not gone, which means it will flare up again ggrr. My biggest gripe is the state of my house..oh I know it doesn't matter.. but it damn well does to me, I like the house to look nice and have spent a lifetime being proud of my home ( different to houseproud!!) and enjoying welcoming people into it, both to live (fostering) and to visit. Now I don't even want the doc to come over the door step. My husband is a great cook, more or less keeps up with the washing and I do the ironing and my son's personal care, but organisation and routine and just picking up and putting away he can't get the hang of at all. Can't moan as he is doing so much already.. but... well it doesn't help to be marooned socially when I am not strong enough to get out and about.

That's my whinge for today. Amazing to hear how well you are all doing, despite the sadness of not being able to do things specially for and with our children. Keep up your desire to be there for them and you will go on being incredible parents.

Hi weegimum, I know it is now 2014, and with your post being in 2012, I was just wondering whether you are still on here...!!!! I feel so much for you and everyone else whom are suffering like diseases, I was diagnosed with CIDP, it's shocking... so I can relate to how you are feeling deep inside, I am 38, I went from running around like a busy bee with life, now I can hardly move... If I can help anyone, please get in touch with me, Take Care...

Hi. I also had GBS 5 years ago and have been lucky enough to have recovered except for peripheral neurological pain in legs between knees and ankles. I found good physio, complementary therapy and determined attitude to recover (you probably have that!) really helped. Good luck, it's a very traumatic condition!!x

Hi! Sorry for hijacking the thread (sort of). I was wondering if Flowerflo was still around? I am a prospective mum (undergoing PGD IVF) with a muscle wasting condition looking for some advice from any mum's facing similar issues!