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?

@Worrysaboutalot definitely, your prescriber (consultant or GP etc) will need to specify on the prescription but it’s fairly straightforward. They can mix literally anything in any formula /flavour / colour if it helps. Which it may if you take a lot of pills and get heartburn or don’t tolerate stuff well etc.

Nat6999

We have the shortlist down to two Peugeot 2009 or the Volkswagen Sharon. Either would suit or family as we need space for DH, me, four kids and my folding powerchair.

But if I don't get the high level mobility, I don't drive and stay in my village on foot, assuming I can get out of the house by then. I am so anxious about my telephone assessment, what if I don't mention the right things. Well I just have to hope I do well enough on the day and get a nice assessor.

Tini17 I am on 32 pills a day including a heartburn medication. But I have a medicine review with my doctor mid September, so will see what she says.

My crutches are bright turquoise, much better than boring hospital ones.

@Nat6999

My crutches are bright turquoise, much better than boring hospital ones.

Yes, they do sound fabulous :)

I am going for the closed cuff Flexifoot black and orange crutches with sculptured hand grips. As I like the suspension I get with the telescopic Flexifoot walking stick. Plus I like the idea of the replaceable feet.

I am wondering if I can pimp them up at some point but they will match with my black and yellow chair bag.

if you like VW, look at Seat, same engine & chassis but more equipment than VW & lower deposits.

@Nat6999

if you like VW, look at Seat, same engine & chassis but more equipment than VW & lower deposits.

Thank you, I have my DH looking at that car right now.

I don't care what I drive, as long as I can drive it and we fit all the kids in !

I must say, I am amazed and impressed at the speed of what’s moved forward for you. Everywhere I know, assessing and processing a blue badge takes a while. Ditto getting an OT assessment. Sounds like you’re getting a very good service. :)

@Schuyler

I must say, I am amazed and impressed at the speed of what’s moved forward for you. Everywhere I know, assessing and processing a blue badge takes a while. Ditto getting an OT assessment. Sounds like you’re getting a very good service. :)

I think the covid restrictions has worked in my favor. It means a lot of the standard clinics or appointments have been cancelled and staff are just processing certain things.

Especially things like the mri scan, usually I would of been put on a waiting list but as that wasn't an option, I was referred direct to the APU at hospital and got the scan that day !

Plus I have been super lucky with the people I have been speaking to, my OT is such a lovely woman. The blue badge I filled out twice and each time I rang to check I had done it properly. On the second phone call , she took pity on me and she filled it in for me on my information. She checked it and passed it to her boss to check straight away. That was very kind of her and her kindness means my hospital visits are a lot less stressful, as DH/my parents can park me close to the door to await assistance.

Still got a way to go.

1. Optician appointment, to check my vision before driving assessment.

2. £50 driving assessment which I am paying for to speed things up. I will send assessment to DVLA.

3. Ringing PIP daily to try and get a cancellation slot for the telephone assessment.

a) Get all the kids ready for school

b) Sort out bits of the house which really need attention

c) Attend endless hospital and doctor appointment

Plus sort the house at the front so I can get out on my own...bit of a long term goal this one.

OT and blue badge lady are two different people. I just thought it read like they were the same person in my last post.

I also have the best consultant and met such kind nurses and hcp's. Plus the volunteers are the stars or else I wouldn't get to my appointments.

Be careful about SUV type cars, i struggle to get my legs in mine, I'm not tall enough to get my bum on the seat & then swing my legs in & can't always lift my leg high enough to put one leg in first. I may end up ending my contract on my Hyunai Tucson early & swap to something lower down like a Seat Leon.

Yes, I need to check I can get in them both as I am now. We might swing by the garages and have a go at getting in them.

@Worrysaboutalot

OT and blue badge lady are two different people. I just thought it read like they were the same person in my last post.

I also have the best consultant and met such kind nurses and hcp's. Plus the volunteers are the stars or else I wouldn't get to my appointments.

Oh I know. I am a social worker who has assisted with many BB applications and we have OTs in our multi disciplinary team so we work together all the time. It’s just that we have extra long waits at the moment due to Covid and risks of going to visit people. Ditto BB assessments due to people being redeployed and just generally, processes. Maybe it’s the areas I’ve worked in. You’ve definitely been very lucky in terms of waiting times. It’s good!

Thank you. I gave been lucky with waiting times. I don't think I would have had an diagnosis or treatment by now, if it was normal times. It scares me to think I could of lost more use of of my arms or my poor legs might have gotten worse. :(

The steroids seem to have stopped the attacks for now.

Yes, I have been lucky with this neurological referral.

Oh my. I have been tracking my chair and it is local and it should be delivered today ! It is amazing to think it was on Malaysia on Wednesday and literally down the road from us now.

Please let the chair arrive without a big custom bill, working, that it fits me and I love it !

The chair arrived !

No custom bill, it works, it folds easily, I fit in it and we had a quick try up a couple of drop curbs outside our house. The first one had the chair folding on me as DH had forgotten to clip the safety latch on the back of the chair, lol.

I found it exciting and terrifying and I am only travelling at 1 and 2...the speed goes up to 5 !

The chair fits in our family car and we are taking her and me and the kids out to Clarks for school shoes. I look forward to fun level floors to practise on.

Chair is now on charge.

Very relieved everything is going ok so far. :)

When you have time, could you put a picture & a link of where you got it from please?

Click here to see my new chair

@QueenCT
Thanks for the recommendation of the Snoozle. I bought one and it really helps me turn at night. I will buy a second one when I have the money.

Going out tomorrow to the cinema with the new chair ! Though I have booked a cinema seat for me as well. I am going to defeat the polished cinema floor, which has terrified me for years. I was so frightened of falling and breaking my knees ! I am cheerful sometimes.

I have also ordered some plumbers piping to put inside my crutch holder holders attached to my chair bag. As the soft holders allow my crutches to be removed but it is harder to put them back in. My DH says piping will cure that, he is ace and very practical.

I really hope he can get the new pegs up in the hall, for the children's coats. I have just got it stuck in my head that this has to be done before term starts or bad things will happen. My anxiety raising a bit at the moment. But hopefully it will all be done in time and tomorrow the cinema awaits :) Yeah date time.

It was so lovely to get out of the house. The blue badge space had enough space for me to get outside my car and into the chair. Then straight into the cinema in the chair. What a lovely date and I enjoyed the film too. :)

That's brilliant, sometimes a change of scene is just what you need

It was so nice to get outside and be somewhere else :)

I am hoping to do a short walk/ride (not sure of what you should say) tomorrow either to local diy place or around the village to see which hills the chair can cope with hopefully meaning I can get to my friends houses. Not that I will bother them even if we manage to get to their doors, we are keeping phone contact only until lockdown is lifted again.

It must be nice just to be able to get out again, i realised today that I haven't been in a shop for almost 9 months, really brought home to me what my life will be unless I get the feeling in my legs back, I'm back at the hospital this afternoon for the MRI on my spine, I can't go for my nerve conduction studies until October half term, the earliest they can fit me in is early October but I have to wait until half term so that ds can take me, he starts in sixth form on Thursday, i don't want him to miss any time at school, he will need as much time there as possible in case of school closures until Covid does one for good.

Nat6999 Good luck with your MRI today. Have they got you on B12 suppliments too ? Hope you get your nerve conduct test done soon too.

Yes, it is lovely getting out of the house but it is only possible as my husband is working from home atm. He Carrie's my chair down the steps and then helps me down. Once he is back in the office I will be house bound until we get the money together to sort out the steps outside the house, which makes me sad. Especially as it might take months to sort out.