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?

I do have a mobility scooter, but I've found it too uncomfortable to sit on. The seat is smaller than my wheelchair, meaning I have to sit very upright, and due to my cancer being cervical, I end up in pain after a short while. I can slouch in my wheelchair!

I can propel myself in my wheelchair, but not for long, as my arms are weak. I can go round Aldi's fine, but not Sainsbury's for instance.

Motoko Slouching in comfort sounds better than struggling with pain.
Guess you decide carefully when to use your energy. I am sorry you are in pain often, yet you have took so much time to extend your good advice to me. Thank you, I do appreciate it.

Forgot to add a personal tiny milestone but I am proud of myself. I managed to complete the easiest 30 minute program on my recumbent exercise bike.

Well done on the exercise!

Good luck today.

My third steroid treatment was today. Volunteer picked me up by my parents car and took me to the waiting room. HCP pushed me to the treatment room.

Waited and got treatment. My lovely consultant was sorting a couple people out on the ward and he came to say hello to me :) He mentioned this was my third treatment and did I feel any effects yet ? I said no but I still had three treatments to go. He said yes, steroids took longer to work than people thought.

I see my consultant again after steroid treatment has finished. I guess he will decide at that point what we do treatment wise. See what improvements I have by then.

Then I waited for the volunteer different one to pick me up again and I asked her to leave me in the carpark in the chair, which she did.

DH arrived and push my chair to the car very fast, he made me smile. I am so lucky to have him. After he helped me into the car, he took the wheelchair back to the building.

It was a billion times easier to have the volunteers help. In fact being pushed made me a little sad thinking back to how hard I found it last week on foot with my stick. I have booked the volunteers help for the next three weeks and feel good that is one problem sorted:)

On week seven when I see my consultant, DH will push me in the hospital chair as I need his emotional support and as a listening ear to catch what I miss.

Three weeks down and three weeks to go ! :D

Glad everything went smoothly today.

Yes, I was pleased that today was more better

It certainly sounded much easier!

It was SO much easier and then DH picked me up from the carpark. He pushed my chair so fast to our car, I could of been running, I loved it 🥰 Simple things.

And when I got home, I had the energy to play with my little kids, which I didn't have last week.

Lol, I repeated the chair bit twice, oh well. It was fun.

You are incredible...finding joy and pleasure amongst all this. I am sure it’s a sign your body is healing x

@WorkingItOutAsIGo

You are incredible...finding joy and pleasure amongst all this. I am sure it’s a sign your body is healing x

I should think more about my body healing, just as a gentle encouragement to my leg and arm nerves to grow and heal. If I do this at night before I sleep, I might get some interesting dreams

Fingers crossed for you, OP.

I'm going through my own journey of hell, I've been disabled most of my life but it's reached a point in the last three and a bit years where I need proper help, moving forwards.

Tomorrow morning I'll have a clearer idea of what I'm looking at.

I hope the steroids start to work and you get well.

Yawwwwwwwn I am glad that you are getting help tomorrow. It is hard to lose our abilities and skills over years. I understand that.

Plus tomorrow must be a lucky day as @Nat6999 is getting help from her consultant too.

I will think of you both tomorrow

It's next Friday I get to see my consultant.

@Nat6999

It's next Friday I get to see my consultant.

Oops. My apologies I will think of you next Friday.

I managed another 5 hours of sleep last night between 2am and 7am. Just like last week. I watched some good Netflix films.

I got an email today, it says my blue badge has been ordered today. I didn't think I would get one.

Feeling very conflicted. But I remind myself if the steroids work well, then I can hand it back.

Until then it will make getting me to various hospital appointments much easier, especially the ones that DH stays with me.

It comes in 10 days and then will be posted to me. Hopefully in time for the Consultant appointment.

On the bright side I have ordered some pastal pink shoes to match my new dress and an purple wallet for the blue badge, so it will look pretty too. :)

I swear if I have to buy one more item labelled 'ideal for the elderly' I will scream.

However as I am getting sick of being unable to leave a car without losing my trailing leg. So I have to twist around with one foot out the car and all my weight on my stick also outside the car, in order to see and therefore find the trailing leg and figure out how to move it over the car door threshold. Which although must be very amusing to watch, is a tad reliant on neither my standing leg or grip on my stick failing. Which would be a lot less amusing.

So I now have a memory foam turntable cushion and a portable car handle (both with elderly in the description) which I hope will help. Plus the cushion might help me with my stuck in a dining chair moments too.

I don't like spending this money on gadgets, especially as I hope not to need then long term. But they certainly help in the short term and today is the day I need it. And money is irrelevant, compared with health. If I get better I will happily charity shop the stuff I bought to help someone else.

Three weeks of steroids left to go !

I'll join you screaming! I've seen those turntable cushions (along with a photo of an elderly lady getting out of the car!) they look like a good idea. I'm ok getting in and out of the car, although slower than when I wasn't ill.

Great news about the blue badge. I've just had mine renewed, but for some reason, it's only for a year. My last one was for 3 years, so it's annoying that I'm going to have to get it renewed again so soon.

I love the sound of your new shoes! I've had to buy new trousers, because I had a nephrostomy put in in April. It drains the urine my kidney makes, via a tube coming out of my back, into a stoma bag, then down a tube to another bag strapped to my leg. My old trousers weren't wide enough in the leg to accommodate all the gubbins. I found some nice wide legged trousers in Sainsbury's.

Glad I'm not just screaming alone, glad to have your good company :)

I like the sound of the nice wide legged trousers. Sainsbury's does some nice clothes. Sounds like a very complicated tubing system to store away, glad you found something which works for you.

I am just living in leggings and tunics/dresses, as they are just super easy to put on.

My DH keeps telling me that the badge is a good thing and when all this Covid stuff goes away, he will take me out somewhere. I can't wait. Well I will wait until it is safer.

I hate the fact that every disability aid is advertised using elderly models, I did manage to get some bright turquoise crutches, if I have to give up driving & hand back my mobility car I will look at getting a mobility scooter, much as I hate them. I'm in the same boat with clothes, I've lived in tracksuit bottoms & t shirts during lockdown, I've ordered some shorts & leggings, but getting my legs in anything is a right performance, I can't seem to get them where I want them to.

Bright turquoise crutches sounds very fun. Sorry you had to hand your car back, that sounds hard.

I haven't had to hand it back, I'm worried that I will have to, I haven't driven it since March.

I also haven't been able to drive since March, it is difficult.