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?

This is great news

It sounds like your escape committee are doing a brilliant job getting you ready for having your independence back. Can you send them round to me next, I'm going stir crazy at the moment, I'm fed up of being stuck at my mum's.

It is good news and I am so close to getting out, just that darn door threshold between me and freedom.

Nat, hope you get some answers and get out of your mums house as soon as you can.

If Covid hits again, we won't be going home any time soon, I'm fully expecting to be here until new year at least, any sooner will be a bonus.

Nat On the bright side y
ou and your son will be able to share Christmas together with your mum. With lockdown tightening again, many families will be having separate Christmas this year.

I am going to the doctors on my own this evening ! I have practised the route with my parents earlier in the week and there is two ways I can get there. Wish me luck.

I think I will continue posting on this thread until I get the front door sorted and therefore achieved freedom and then I will let it drop away.

It has and remains a positive place for me to get advice and support and I thank everyone who has helped me (in case I forget to do that later)

Today I had my adapted driving assessment.

I paid privately to get a quicker date and I am glad I did. The staff were lovely. The OT checked out my arms and legs and general medical questions.

Then the adapted driving instructor took me out and had me try two different sets of hand adaptions. One was four times the price of the other and four times as nice ! Cheap one was £400 and the expensive £2000!

He had me drive around the industrial estate with both types of adaptions and then he offered me the option of going on the proper roads with the nice set. I was very anxious but wanted to do it and I did and survived

They recommended that I didn't use any foot pedals, which was expected but still made me a bit sad.

They also showed us loads of different hoist options for my chair.

They are generating a report for me which they will post to me. I will post it on to DVLA, with the hope that DVLA will decide to issue me a medical license, rather than take my license off me altogether.

I still have another 4 weeks to wait to see if we will get help with a car via PIP. Everything crossed that we do but if not we will look at sorting something ourselves.

I am very pleased to tick this adapted driving assessment off my to do list.

Where did you go for your adapted driving? I haven't driven now for over 6 months, I don't need to inform the DVLA as I haven't got a diagnosis yet.

@Nat6999

Where did you go for your adapted driving? I haven't driven now for over 6 months, I don't need to inform the DVLA as I haven't got a diagnosis yet.

Just google DVLA assessment centres and ring the one nearest to you.

We paid £50 for this one, which in light of all my other condition related expenses is a drop in the ocean. :(

Just had a phone call off my consultant (he is a wonderful man ringing at a weekend) Checking up on how I am symptom wise and he decided to up my immune suppression drug and said it will go up again in 6 weeks time. If the blood tests remain good. Then he will start increasing the steroids.

I am just really sad about the increase in pills, now and in the future. I was hoping to start reducing the number of pills I take daily, at some point and this is looking less and less likely ever happen.

Guess I need to accept I will never be healthy and without medication and that hurts.

You would probably think me daft for having such hopes for my future. But don't we all want to be well. I still think maybe I will wake up one day and my legs will be better, even though I know it can't happen. I still hope it will.

I need to balance realism with my hope and I am finding this hard today.

Tomorrow will be a better day.

The sun is out today after two days of rain, I am glad. I needed to see the sun.

Hoping to get to the library on Thursday, as it is reopening this week. Not sure what I am going to do there, I am just very lonely atm. Just like to talk to some people but I don't want loads of questions about my chair either, sigh.

Everyone else is at work/school during the day and I am so tired and find everything so hard, that I am ready for bed by the time everyone else finishes for the day.

Off to tidy the kitchen one handedly, whilst I use a stick to keep me upright. [Happy]

I am going to get a mobilty car !

I was very surprised but PIP gave me high mobility and a 10 year award. The 10 year bit made me sad, but help with a car is priceless.

We still have to find a hefty down payment for the car and for the adaptions but it is doable.

More importantly I could get on the road again, I am so looking forward to that. It will be early next year and dependant on me getting a medical license off DVLA, but everything is looking very hopeful.

That's great news!

That's great OP!

I am very pleased with the future help with a car. Though I am still shaking, I was so nervous about opening that brown envelope!

Today I took my own book to our village library. I just wanted to talk to some other people and see different 4 walls.

There was no seats there, as the staff had been told to remove them dud to Covid! But I come with my own build in chair these days, so that wasn't a problem. So I sat looking over the empty children's area with their cheerful wall displays and read my own book for couple of hours.

The librarians clearly weren't expecting anyone to stay and read but were kind to me. I think I will go back again. They say a change is as good as a rest and it was a couple of hours out of the house :)

Officially I have 3 weeks to wait for my driving assessment report but I rang to check and mine is the next one out ! Which is great, so I can email it to the car garage and print out and post it to DVLA.

Then I can start asking the DVLA people to make a decision. I really want to get my license sorted out asap. Strictly speaking I still have a full valid license but I want to have something in writing confirming that, before I get behind the wheel again, even of an adapted car. Things need to be done properly, if not the insurance will be invalid!

Anyhow still a bit shell shocked about the PIP. I was expecting to have to appeal. Everyone says how very difficult it is to get and I wasn't expecting to actually get help. However I am very grateful to receive it. :)

I’ve been following your thread and I’m so glad you’re getting your independence back, wonderful news re the car and PIP.

Thank you InglouriousBasterd. I have been very lucky overall. Kept enough arm use to be able to drive with hand adaptions and to get PIP help with the car.

Just need to sort out my driving license and front door :) Nearly there, just a few more hoops.

You are nearly there! All upwards from here

I've been following your posts too op and I just want to say you have such an amazing attitude, you have faced such a lot but you always sound so positive.

I'm really pleased you were awarded the higher rate, you deserve your independence

dappledsunshine Thank you for your kind words. I am just doing the best I can day by day. I do get very down sometimes but I try to concentrate on things I can alter, than tilting myself at windmills that I can't change.

I am so looking forward to being able to leave the house on my own, before Christmas and next year being able to leave my village (driving license permitting)

Independence is to be treasured

Stool One

Stool Two

If I am successful getting my driving license back (everything crossed), my next hoop is making it possible to use the mobility car I have applied for by myself.

I have sorted out most things but I need to be able to safely hoist my car in and out of the car.

I am lucky enough to be able to walk a few steps with my crutches, which will get me out of the driving seat and to the back of the car. However I need something safe to sit on whilst I hoist the chair out and unfold her ready for use and when I put her away.

Do you think either of the stools I have linked too might work. I am fairly unstable so I do need something reliable. It has to fold, so I can keep it in the boot of the car at all times.

Open to any suggestions.

Or maybe I would be better off with a folding perching stool. But they are more expensive.

Week, my mobility application has been approved, now just waiting :) Estimated date January

Still waiting to hear back from DVLA about my driving license.

I have an appointment for a DEXA Bone scan, wonder why they are doing that ? Is it to make sure the steroids aren't damaging me ? Maybe ?

OP, you are such an inspiration. I hope people read your thread and gain faith in the power of staying positive. Your journey has been traumatic and yes you have ne et stopped focusing on the way forward. You are an amazing person!

A DEXA scan is a nine density scan. Indeed, steroids can seriously affect bone density so they need to check if you require some preventive treatment. A few more pills to add to the list!