Anyone has experienced numbness of body and neurologyl

[Worrysaboutalot]

Update if you read my last now deleted thread I spent 9 hours in A&E and after blood tests and bladder ultrasounds, the orthopedic doctor told me I have not got the red flags of pain and wee retaintion for Cauda equina syndrome and discharged me, referring me back to my GP. Thank goodness.
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I am going to be ringing my GP back 8am Monday when they are open to get medical help but I was hoping to find someone who has had my symptoms and sorted it out as I am frightened and need reassurance that everything will be ok.

Back end of 2019 I started with burning hands, then feet. Then hurting feet which the GP said was nerve pain (so I started taking Amitriptyline two weeks ago)

Then numbness moved from left shin to 'shorts' area to right shin. So numb from waist down.

I can still walk but it is very difficult.

I couldn't feel my stomach from Tuesday, no idea if I am full or empty, no hunger.

I can't tell if I need a wee, it leaks out if my bladder is too full but I can let the wee go when I go to the toilet, by the clock as I have no urgency feelings.

Friday evening my bowel fell asleep and I can't tell when I need a poo. I just started leaking poo and dashed to the toilet :(

Saturday numbness moved up from belly button to bust line. Numb from bust line downwards.

With GP's permission I stopped the Amitriptyline two days ago, to see if that would help my symptoms.

Clearly my bowel has got worse and the numbness has increased and the pain in my feet has started to return. Coping with paracetamol for the time being.

My GP has an referral in to neurology which has a 6 month wait and he promised to chase Friday.

(GP has also ruled out thyroid levels, vitamins levels, diabetes hence the neurology referral)

Has anyone had similar symptoms and got an answer?

Picking kids up from school friends house. They get the bus to school.

Also doctors is local but the only adjustable height table is in the next village. So I need a car to access smears or anything else which required an examination.

Sigh.

Ugh. That’s a lot of car things that will have to be re-thought somehow.

I know. :(
I just can't think about it yet. We are in a full lockdown atm and in the holidays, so most stuff needs sorting by September.

I am just pushing PIP (and panicking about the results), looking at chairs and outside ramps.

The lovely OT and her boss are coming next week or two. See what that results in. Then depending on that, DH will sort it out diy style ! He is clever like that.

Just sorted out my new prescriptions into my pill boxes. I now take 29 pills a day except Friday when I take 30. Which is 204 pills a week. Surely I won't get any more , lol

I take nearly the same amount, neither of us could ever get a job, we haven't got time after all the rounds of pills.

Nat6999
I glad I am not the only one with loads of pills to take. Yes, it is time consuming !

However I do intend on getting a job. For a start, I need to cover the money that I am costing the family at the moment. Not straight away but as soon, as I am up and running, as such, I will start applying for more jobs.

I am hoping that more employees will be open to giving more home working, or some home working days.

Have you claimed ESA yet? If you get the highest rate of ESA it is contributions based & it doesn't matter what your husband earns, that & PIP Iif you get the highest rate is a good amount to have coming in. You need to concentrare on getting yourself well & as mobile as you can before you think about working, you will probably find if you start having physiotherapy it is very tiring & with trying to manage looking after the house will be as much as you can manage. Have you thought about blogging to keep your mind active? I have been following a couple of ladies who have neurological complaints, they have been very interesting to read.

I can't get ESA, as I have been raising my children and you need to have to find done paid work in recent years in order to claim it.

Do you have the link to the good blogs, I would be interesting in reading them myself.

My consultant said there was no point in doing physiotherapy. He explained that either my cell bodies nerves are dead, or alive and physiotherapy isn't going to make a difference. :(

But I am very tired these days. I do need to get on an even keel before tilting myself at windmills.

My DH said bit ti worry about working atm but it is something I want to do. Or maybe go to college and retrain as something. Have to give it some thought.

@Worrysaboutalot

I can't get ESA, as I have been raising my children and you need to have to find done paid work in recent years in order to claim it.

Do you have the link to the good blogs, I would be interesting in reading them myself.

My consultant said there was no point in doing physiotherapy. He explained that either my cell bodies nerves are dead, or alive and physiotherapy isn't going to make a difference. :(

But I am very tired these days. I do need to get on an even keel before tilting myself at windmills.

My DH said bit ti worry about working atm but it is something I want to do. Or maybe go to college and retrain as something. Have to give it some thought.

Sorry if this is naive/ignorant but if your motor nerves are okay is there a way of learning to use your legs better to walk even though you can't feel much? Does the OT help with this?

It doesn't work like that. In order to walk we need working sensory nerves sending messages to and from both legs. I can't do that and therefore even looking at my legs and using my stick, I can't overcome having no sensory messages. No amount of PT will help, as my motor nerves and muscles are fine.

@Worrysaboutalot

It doesn't work like that. In order to walk we need working sensory nerves sending messages to and from both legs. I can't do that and therefore even looking at my legs and using my stick, I can't overcome having no sensory messages. No amount of PT will help, as my motor nerves and muscles are fine.

I'm sorry to hear that.

I follow Georgina Grogan on Instagram, she also has a blog, she has chronic pain from a car accident & uses a power chair, she doesn't only discuss health stuff, she does fashion, makeup, hair, home, pain relief, going out, her fashion covers what to wear if you are in a chair as well as ordinary fashion. I follow Rhian Gibson on YouTube, she has MS, is a young mum, she also blogs about health, fashion, home, children. Georgia is from Sheffield like me, she will always answer questions if you ask her. Have you been assessed by wheelchair services yet? If you need a chair to go outside, you are entitled to a powerchair on the NHS, you need to ask about a personal wheelchair budget.

To add to the list of reading, I read a book called ‘the world I fell out of’ by Melanie Reid. She got paralysed from neck down in a horse riding accident. Very good book. Maybe you’re not ready for those kind of books tho.

mrpumblechook Aww, thank.

That is how the consultant explained it to me. I still don't understand why the working motor nerves and working muscles isn't enough, but I have to accept it.

Though I will still do my exervise biking and something to keep my arms strong, in case I get a miracle recovery one day.

Thickfast Thank you for the book to read. I will have a look for it.

Nat6999
Thank you for the blog recommendations, I will go and find them and have a read.

I to not meet the criteria to be helped by wheelchair services. I have been told that by reading their documentation, speaking to them on the phone myself, by the gp who refused to refer me to the wheelchair services and by the lovely OT.

My council ONLY give inside wheelchairs to those people who can not stand or walk one step, if their house is big enough.

If successful they will get a manual chair only. There is another set of criteria to reach the need of a powerchair !

I even asked them if they would assess me as to the size of seat I should have and they said no. They didn't help help like me who don't meet the criteria.

The doctor said that the wheelchair services sometimes refuse to help people who are double amputated and clearly can't stand !

So no help for me from wheelchair services and definitely no vouchers, every penny for my future chair comes from our pocket.

Even though your legs won't benefit from physio, you need to keep your central core & upper body muscles as strong as possible. My exh used to go to a core physio group which helped him be able to move himself around, dress himself, get on & off the toilet, in & out the car & wheel himself in his wheelchair.

Nat6999
Yes, I am going to look online and see if I can find stuff I can do.

At the group exh went to they did things like sitting on an exercise ball & batting a balloon to each other, sitting on a wobble cushion & doing stretches. Exh used to spend as much time as he could sat on his exercise ball at home to strengthen his core, his balance improved as his core got stronger.

I am awaiting the forms from the DVLA to ask to be reassessed. I am so nervous about learning hand controls, I hope I can learn it. But it is likely to be several months until I get an appointment.

I can no longer drive anymore, now I have officially notified the DVLA of my new condition. Not that I have driven a car since March, it wouldn't be safe.

Plus I sent an email to the government asking about import duties for a powerchair. I hope they get back to me soon.

You need your consultant to refer you to wheelchair services to be assessed for a wheelchair, they now give you a personal budget to pay for your chair, you can then add your own money to get a better chair if you want. If you get given enhanced mobility PIP & decide to have a motability car, you can pay £100 to have a manual wheelchair as well as your car. If your wheelchair budget pays enough to get a powerchair, then having the manual chair for inside at home would be useful. Did your OT assess your home to see if doorways are wide enough to enable you to use a wheelchair within your home?

Nat6999 I really appreciate your posts, I am learning so much but can you please stop talking about wheelchair services, they will not help me.

I am glad you live in an area that does help you, I do not. It is unfair but that is the way things are.

TBH my consultant was pleased I walk around the house with my stick and grab rails. He is staying upright when you can is good for your body. So unless I get worse, I don't want a wheelchair for inside.

I have resigned myself to buying my own chair and probably getting little to no help with the ramp. But that won't stop us we will get sorted and way or another. Well it falls upon my lovely DH and he will get it sorted.

I would speak to my MP, it is so wrong that different areas are treated differently, healthcare shouldn't be a postcode lottery. Have you previously worked anywhere that has a benevolent fund for present or previous employees? I was a civil servant & can apply for grants to help me with adaptations & equipment when I am ready.

Nat6999
All my energy is going towards trying to manage my new life as efficiently as possible and I haven't got the strength to try and change the system.

It isn't trying to change the system, it is trying to get what you need so you can lead the best life you can. Your husband could contact your MP on your behalf, I had to get mine involved when I lost my enhanced PIP, without her I wouldn't have got mine back & still wouldn't have a car, it is what they are paid to do, mine was lovely & couldn't do enough for me. I won't hesitate to contact her again when I am ready to think about applying for priority to get a more suitable home if I need help.