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?

Is it?

OMG, I have a PIP telephone assessment tomorrow, a cancellation !

All I have to be is truthful and accurate. I hope that I met the criteria for the high rate of mobility help but if I don't I have to accept this with grace and move on. At least by 12 noon tomorrow it should be over.

Please send good thoughts my way.

Keep your wits about you, if they ask if you can do anything, don't answer yes but.... because all they will put down is yes, remember if you can't do something reliably, repeatedly & safely then you can't do it & if you can't do it over 50% of the week then you can't do it. Try to have someone with you, have your phone on speaker & don't be afraid to ask for a break, good luck.

Nat Thanks, I took your advice.

I waffles a bit because I don't get to talk to many adults these days. But told the assessor that up front and told her to tell me to stop and refocus on the question, which she did :)

I had a mild panic half way though as my watch buzzer had gone and that meant I had to take 11 pills now. She patiently waited whilst I took them.

Luckily we had just gone though my pill taking methods. Daily pillbox with 7 doses of pills over 30 a day. 7 buzz alarms tell me when to take meds and I have a sheet with the pill box to confirm which slot I am taking. Aka at 12 noon I take 11 pills for the "Evening" slot.

Oh gosh, I hope I am able to get some mobility help. I was upfront from the start, I said I already had a pip award which has another 2 years to run and that because I had lost my mobility, I was reapplying with the hope that I would qualify for help with a car.

Assessor was lovely. Assessment went over by 40 minutes ! Now weeks to wait until I get a decision.

You can ring up for the assessor's report as soon as you get the text message to say they have received it. You will get an idea of what award you are likely to get & it gives you time to gather extra evidence if you are going to have to do a mandatory reconsideration or appeal.

Not read the full thread so sorry if this has been covered.

It sounds like fnd (functional neurological disorder) I woke one day with burning feeling in my feet and back, back spasms due to my bladder being so full but had to urgency to go so didn’t wake. 12 hours take I couldn’t feel anything waist down and ended up but being able to walk without dragging my feet. I could weightbare but struggled for what I describe is getting my brain to connect to my feet to move them. On the days I have full function of my legs, I get the burning sensation. On the days the burning sensation is gone, I can’t feel anything at all.

I’m waiting on referral to neurology so not sure on treatment.

Don’t want to scare you but thought you may appreciate being told what it could be so you could mention it to GP etc. Hope you feel better soon

MedicalMystery1

I am sorry to hear you are having similar medical problems to me and I hope your neurology referral helps you.

I was diagnosed with Dorsal Root Ganglionopathy by my neurologist. I wonder if you will get a similar diagnosis ? All the best.

Nat Yes, I will do that.

So sorry @Worrysaboutalot have been missing as back at work (admin in a school - am very relieved boss has agreed to temporarily suspend hotdesking and I now have a lovely perspex shield between me and the students! Glad to hear your adventures with your chair, sounds fab - I found my scooter opened so many places that I hadnt been to in years. Hope you continue your adventures and that outside access is coming soon. Also good luck with your PIP, I got it first time and wondered what went wrong as so many people talked about difficulties being awarded it. Yes there were inaccuracies but I still got awards. They now cover our gardener as I cant, and my DH hasnt got a clue with gardens. It already looks better in several months than it has for years. Even our neighbours have admired how much nicer it looks.

And I also wanted to say @QueenCT thanks from me too for the recommendation of the Snoozle. I have painful hips most mornings and assumed it was the way i slept so got a leg pillow which helped but still got pain. I have not noticed the pain since I started using it. I realised that when turning over I was moving my shoulders and then lifting my hips which banged down when turned over and now I dont do that. So lovely. I must get a second spare one too!

@QueenCT Big thanks from me too. I bought one Snoozle and it really helps me turn over with numb legs.

Like Pericombobulations I have ordered a second one, so when I change the bedding I always have a clean one.

@Pericombobulations I am glad your boss is making changes to keep you safe at work.

Glad to hear you got PIP easily and that it covers your gardener. My mum is like you and loves her garden, whereas I tend to kill all house plants in the vicinity !

I am so nervous about PIP, as this could be the difference between me ever being able to get a car to drive again ! But I have to chill out as it will be weeks before I get an answer. I have another letter from the consultant. Not sure whether I should be sending it in to pip, or is it too late now I have had my phone assessment?

In other news, we are hopeing the OT will be able to get the extended doorstep platform just outside of front door.

We will buy rubber wedged small ramp one on each side of our front door threshold to hopefully get my chair out.

Plus we won an auction to buy a second hand modular ramp, which we hope to attached on the new platform, to get me to the pavement on my own steam.

So please keep figures crossed that the OT can authorise the platform work AND that this ramp will fit as we hope.

I totally love the freedom of having my chair, she has a name and everything. I live zooming around the cinemas and supermarkets and other flat places.

Had a couple of hairy moments getting stuck around my village. My DH is taking me on walks to get used to Chair but today was difficult, I got stuck and panicked. I was do happy DH was with me and we nearly got to my friends house. The final descent of her drive was too steep. So DH delivered her birthday card.

Overall I am happy, with my family and Chair but there are a lot of places, I can't get to....yet.

(NC!) I'm so glad it's worked for you both
When my back went, it took me 90 mins to get out of bed while screaming in pain and I had to use the headboard to help. I had spinal surgery and bought one to use after and it made such a difference

Yes, they really do make a big difference. I am still uncomfortable turning over but I can do it with much less pain :)

Just see this, and was thinking of purchasing another sheet when I get an email from them offering money off for leaving a review so bonus!

Even better they have a sale on the sheets at the moment, so have bought two more so have a spare to take on holiday etc.

@Pericombobulations

Just see this, and was thinking of purchasing another sheet when I get an email from them offering money off for leaving a review so bonus!

My second one just arrived now!

I did the same as you, I did a review for money off my next purchase. :)

Worrysaboutalot How are you doing? Have you got any more feeling back?

@Nat6999

Worrysaboutalot How are you doing? Have you got any more feeling back?

I haven't got any improvement, still numb from under my bust to my toes and my neurologist said I am very unlikely to see any improvment in the future. :(

I am getting by, just trying to get things sorted both in my house and outside.

My PIP report is back with DWP, I have an 8 week wait to see if I get help with a car or not.

I am waiting to get a driving assessment and to hear back from DVLA.

Our second hand ramp should be with us tomorrow I really hope it does what we hope it does.

I went out with my parents today, it was so lovely to be out in the sun. But it still makes me sad I can't feel the warmth anymore.

Sigh, this morning outing has made me so exhausted, why is everything so hard these days. I need to shape up and get more done instead I am having a lie down to get the energy to parent the children when they get home from school.

@Nat6999 How are you going? Are you getting your injections now ? Do you have any dates for your other tests ?

I've had my last B12 injection today, the doctor will only allow the bare minimum of 6 over 2 weeks. I still haven't got my results from my spine MRI, my nerve conduction tests aren't until October half term because I need ds to take me.

Glad you are getting the treatment, even at the bare minimum
I guess they will retest and up the dose until you test higher ?

Hope your MRI and nerve conduct test come back clear or with a minor treatable condition. You have enough on your plate already!

Ds is being interviewed by Look North next week about being a young carer, he is very excited about it. I'm proud of the way he has settled down in sixth form & how hard he is working.

@Nat6999

Ds is being interviewed by Look North next week about being a young carer, he is very excited about it. I'm proud of the way he has settled down in sixth form & how hard he is working.

It is lovely that you are proud of your DS, I glad he settled well into 6th form. Must be hard doing that with Covid around.

It does sound interesting to be interviewed (though I wouldn't like to do it !)

Not good news
The OT and the builder will not help us with the access outside (steps down to the pavement.) I cried but DH said we didn't need them and said goodbye to them.

Good news We won a second hand modular wheelchair ramp on eBay.

Even better news My DH and his friend rebuild the ramp and it fits ! It is steeper than the regulation suggest but my chair can do it, as long as I stay at a low speed and I have brakes.

So I am so close to getting out on my own !

Last step Just need a new front door with an aluminium low threshold which is 15mm height rather than the 70mm we have now.

Survey next week and an install date in December.

Then I will be able to get in my chair and get to the pavement, on to primary school and back home again.....on my own !

I can't wait