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?

We are lucky enough to have enough in the bank to cover a nice wheelchair but not enough to cover the ramp by a mile.

Any way I wake up in a logic mood, so I ring wheelchair services direct and ask if (after a gp referral) could they assess my need for a ramp and send this to my OT.

Yes, you are right we only give inside wheelchairs.
No, we do not assess needs that is what Adult social services do.

So I rang Adult social services back and ask who needs to assess and for a ramp

They look me up on the computer and say you already have an OT from us. She needs to assess you and apply for a grant for you.

Oh, you need help getting two kids to primary school and you can't do it, as you can't get out of the house with a mobility aid. So we have a deadline, make sure you tell your OT.

Apparently they did change the procedure a couple of months ago, so she must not of remembered.

So it is back in the remit of my OT. They mentioned taxis and chaperone at one point. So it might be a case of what is cheaper, getting a ramp so I can parent my own kids or a couple of taxis a day for the next 3 years.

I feel bad that I told AdultSS and they sent my lovely OT an email and I hope she doesn't dislike me for doing it. However I genuinely appreciate everything she has done for me. But I can not stay home forever. I have to keep trying.

Spoke to my OT.
Very frustrating conversation on both sides and I cried.

Basically it is their rules that they only do ramps for inside chair users.

They will revisit us next week to give us a 'second opinion'. Which is pointless as they will just repeat that I am not to be helped.

I asked about appealing and asked my OT to bring the details of how I can appeal to the meeting next week. She agreed to.

DH is looking to see if we could chain the wheelchair in the car. I am concerned that it is likely to be stolen as it will look like a nice pram folded up. Plus I don't think I will be able to lift it in and out the car.

If I get help with a car through mobility hopefully I will get hand adaptions and a hoist in it.

Awaiting Thursday and the consultant appointment, maybe he will have another treatment to try.

I found this from a couple of years ago: community.scope.org.uk/discussion/46926/front-door-ramp.

The knowledgeable person says stuff that might get you a ramp on appeal, so worth checking if you can get statements from your consultant verifying the key points.

She also linked this place for portable ramps, could that be an option as they look quite cheap? I don't know how you'd attach one by a padlocked chain or something to prevent anyone moving it when you go out by yourself, but maybe some creative solutions can be found.

www.completecareshop.co.uk/wheelchair-and-access-ramps/

You could ask the OT to work out what sizes would fit and comment on the types, even if she isn't putting you forward for ones.

Have been for my MRI this afternoon & blood tests, within 2 hours my consultant has rung me to say my brain is clear so he now doesn't think it is MS, my vitamin B12 levels are unreadable they are so low which can cause something called subacute combined degeneration of the spine which gives exactly the symptoms I have.

I haven’t posted before, partly because some of your experiences catch a raw nerve for me. I have MS and have deteriorated considerably in the last couple of years. I now use a wheelchair most of the time out of the house. Although I resist getting one (because I’m not disable in my mind), it has been a godsend. I can lift it in and out of the car myself though.

This is the folding electric wheelchair I have. I bought it on credit over two years.

Good luck

OvertiredandConfused That looks a lovely chair. I take it you are happy with it, therefore I am putting it down on our list.

We are going to a reasonably big mobility shop after the consultant appointment on Thursday and will look at a few chairs in person and have a think about what we are looking at.

My favourite so far is this one, Foldawheel 1000 which looks very like yours.

Nat6999
Glad your brain MRI is clear and your consultant has found the B12 vitamin deficiency. Is he referring you for b12 injections ? Hope you are processing everything well.

Yes, looks very similar.

Being able to move around outside and in shops (and hospitals) independently is fabulous. I hate needing it (and other aids) but the alternative is worse

OvertiredandConfused
Yes, I agree with you, I can't wait to move independently again.

I am trying to rationalise it by saying the bad thing is my poorly legs and the good thing is the wheelchair that will be my good legs replacement.

It is hard sending (((hugs))) to you.

CAn you apply to charities for any of this stuff ?

Have you a local carers trust - they can signpost you and your amazing DH

I lost the long post I had typed out about charities. Survise to say, I am neither young or old enough and my rare condition has no charities, so it isn't an option so far.

Plus selfishly I want a solution now not in 6 months time :)

So unless the consultant has a major cure for me on Thursday, we will pop to a nearby mobility shop on the way home. Just to have a look at options.

My OT asked me to get a GP to refer me to wheelchair services (pointless as I had already read their requirements and knew I didn't fit them)

I spoke to a brand new doctor who listened to my request and went to talk to one of the senior doctor and came back and said Dr other had said that even genui other patients who couldn't stand were rejected by wheelchair services.

Even though that is what I was expected, it upset me. Especially the cut off 'genuine' as I can hobble around the house with a lot of effort, my stick and without shoes. I can only walk a few steps with difficulty outside the house, then I stop.

Especially as the OT keeps repeating that they only help full time wheel chair users, that are prescribed chairs.

But to be outside I have to be in a mobilty aid, else I will get nowhere. I am just feeling judged already that I am faking and making this up and that I am request help (ramp) that I am not entitled too. I feel so sad. I am feeling guilty enough at looking at mobility aids but the alternative is to stay at home all the time :(

Then my OT rang me back and said she will try to help about outside and she will ring me next week. Which is kind of her but I expect it will be rejected again. I simply don't match their criteria.

I was wondering if they might do the first four feet just enough to get me safely onto the front garden. Then we can diy the rest with paving slabs and knock down part of the brick wall. It would look stupid but if it works I will be happy.

Otherwise I will gratefully accept her suggested offer of extra step and handrail. I can't get the mobility aid down but it would mean I could get out of the house in case of a fire, even if I can't go onwards.

I guess I always thought that 100% of wheelchairs users couldn't walk at all
Now I have read up on ambulatory wheelchair users, I know people use them for other reasons.
For me it would be because I have difficulty walking at all, can't walk a distance, to prevent falls and injuries.

Sigh

You've really been through the mill, I hope your OT comes through for you.

I used to work in Social Services as an OT many moons ago. We had a limited budget for ramps.

My solution was to find a decent local
Carpenter/ handyman and give him the plans I had drawn. You can have a safe semipermanent ramp very often, you don't always need to go for concrete, and indeed many situations means you can't.
We would do a joint site visit and the carpenter would make me a tantalised wooden ramp to specification and the surface was covered in a type of permanent grit to prevent slipping. This can mean more than a simple straight slope. I've had lots made with a platform, handrails and two slopes to get the gradient.

I know it was a long time back (20 years) but the bill rarely ever exceeded £400 inclusive of VAT.
A normal bill was around £200 for a shorter ramp.

You can also get decent fibreglass ramps in different lengths at a good price. These can be folding or manufactured to be static and semi permanent. I'd issue these as they could be reused if the client moved house.

Is your OT able to advise on specification? It sounds as though considering all solutions might be your way forward.

Best wishes.

planningaheadtoday
Thank you for your helpful post. It gave me several options (that I would never of thought of) to discuss with my OT and I like the price point :)

Apologies if already been posted but one of these might help

https://www.thesnoozle.com

@QueenCT

Apologies if already been posted but one of these might help

[[https://www.thesnoozle.com]]

It hasn't been posted before and I will order one later.

@Motoko You might like the quoted link too ?

I'll check it out.
Sorry I've been quiet, was on holiday last week. Went to Swanage in Dorset, it's really lovely down there, although spent most of the time in the flat as I haven't been feeling very well. Luckily the flat we stayed in is above the beach, and it has a small balcony, so I sat out there watching all the boats.
Still not feeling great.

@Motoko

I'll check it out. Sorry I've been quiet, was on holiday last week. Went to Swanage in Dorset, it's really lovely down there, although spent most of the time in the flat as I haven't been feeling very well. Luckily the flat we stayed in is above the beach, and it has a small balcony, so I sat out there watching all the boats. Still not feeling great.

Motoko I glad you got away on holiday and enjoyed looking at the boats. I am sorry you are still feeling unwell, that is rubbish. Look after yourself.

I only @ you in, as I thought the easy turning sheet looked good for us both. I have ordered one and will let you know what I think of it when it arrives !

Salford consultant didn't see any improvement in me. Even though my DH thought I was walking better. (I think the stair lift helped me put more effort into walking, that I no longer need to pull myself upstairs.)

I am now to take Prednisolone, Alendronic Acid, Adcal, Mycophenolate Mofetil on top of my other medications.

We asked about when would the right time to consider an mobility aid, he said now would be a good time to do that.

I asked about driving, he said l was to tell DVLA about my diagnosis and they will take my driving license intially and then in 6 months or so DVLA will assess me later to see if I could drive with hand adaption. The consultant said that would be his response to DVLA, when they asked him.

It was kind of expected but I still need to work my head though everything.

We swung past a mobility shop on the way home. I tried a manual chair and I could barely move a metre in it. The scooters were all too big. I then tried a couple of their folding powerchairs, which was happy/sad. Fun to be able to move on my own but sad, as I don't want to need one.
The salesman took me onto their car park so I could try over the kerbs.

I couldn't even start to fold or lift either chair but I could push it on the manual setting which was good.

So putting aside my current issues of getting out of the house with said mobility aid, I would need a mobility car with hand adaptions and a hoist to actually go anywhere ! Well that is up to pip and if they feel I fit the high mobility criteria or not.

Off to watch some rubbish tv and have an nice evening with my family.

How did they rule out cauda equina if you’ve not had an MRI?

@Hoggleludo

How did they rule out cauda equina if you’ve not had an MRI?

Because I did have both a brain and spine MRI weeks back and I am grateful, that they both came back clear.

Do you live somewhere where you need a car a lot? Or can you get out and about in just a wheelchair?

@ThickFast

Do you live somewhere where you need a car a lot? Or can you get out and about in just a wheelchair?

Yes, I need a car for. For kids after school clubs in next village. For Dentist For Optician For food, clothes and general shopping. Picking high school kids up to and from school. To visit my parents Dropping kids at camp

Locally (if I sort out a ramp and chair)
Primary school drop off
Library (with weekly book club)
Community Centre (with painting club)
Church (with knitting club)
Several small shops selling expensive but nice food, butchers, tiny co op shop etc.
One cafe, with step outside.