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?

Finished filling my pip form asking for reassessment due to my symptoms getting worse.

I was warned they might remove the basic care rate I currently get for my bowel disease. But I am desperately in need of getting the higher mobility rate, so I can either lease a car with adaptations in place or another mobility aid.

As otherwise these four walls are all I am going to see going forward and that is soul destroying, therefore even though I have years to run on my current award, I have decided this is a risk worth taking.

I have spend the last two weeks typing up answers on the computer small bits at a time, all 9 pages of it !

Much easier than hand writing as much as would fit in those tiny boxes. Plus writing has gotten harder recently especially as my right thumb is numb

In the end I got the label printer out and stuck many labels saying "Please refer to the additional sheets" and stuck them in all the parts of the form where it says write here !

Then at the back after their form, I attached my nine pages of answers printed out in full with 4 medical letter copies at the back.

So they have 63 pages to read ! I really hope I haven't made a mistake or wrote the wrong stuff.

I have found dwelling on everything that has happened to me over the last two years but in particular since April, very difficult. Having to detail everything has made me feel very down.

I am awarding myself a Saturday night off from worries. What will be will be, I can't change other pip assessors actions I will have to be patient and wait and see what happens

So tonight will be board games, computer games and very bad tv with DH and the kids

The best thing I did was getting a welfare rights worker fill my forms in for me, they also helped when the DWP tried to drop me from enhanced to standard rate.

@Nat6999

The best thing I did was getting a welfare rights worker fill my forms in for me, they also helped when the DWP tried to drop me from enhanced to standard rate.

I can't go to see anyone atm, as I am shielding atm. But if this form goes all pear shaped I have googled my nearest welfare care centre and will go to them to get help.

Thanks Nat

Good luck with the assessment, and have a fun night playing games.

Find out if you can send them pictures of what you have filled in so they can tell you if anything needs changing or adding.

It is much harder to turn over in bed. Clearly this wasn't the top issue I had recently (understatement of the year !) Therefore I haven't felt the need to moan about it until now.

Guess as I find solutions to help drag my body around using various aids, I am finding a new temporary normal. Therefore new minor issues become my focus.

So any suggestions are welcome. I do use the bed sitter upper and the headboard bars to turn over but my numb legs are reluctant to follow.

My to do list
Husband to send PIP form in the post.
Builder to survey front garden steps.
Kids to help me put away all the dry clean clothes husband has been washing.
Play Monopoly with DD2

Lastly print, cut, glue pictures on the picture cube for my parents. My sister and I are taking turns sending thoughts to my parents. It is my turn and I am using pictures of our kids mine and my sisters. So the cube has all the grandkids on it. I hope they will like it.

Keep a copy of your PIP forms, it will be useful to refer to if you have a face to face or telephone assessment. You will need it if you have to do a mandatory reconsideration or appeal should they not give a high enough award. Have you claimed employment & support allowance? You can put in a claim for that as well, have you worked & paid NI contributions before you started being ill?

I no longer seem to be able to turn over in bed, in my sleep, so I wake up and kind of half sit up to turn over. Could you sit up and with your hands, move your legs or something?

Nat Yes, I have a copy of the pip form to refer to. I am not entitled to ESA as my husband works. However I get a stamp for receiving child benefit until DD2 is 12yo which is 2 years off. Then I will have to look at getting my stamp hopefully by working at that point.

Motoko
I guess I will have to try sitting up to turn over. Don't want to wake DH, so it will have to be quietly tried :)

The builder came and it has raised a few issues.

We are having a think. But DH is saying a ramp is 'nice to have' and a long as the stairs have a handrail, I will be fine.

But this has really upset me, I really think we need a ramp. Is 20% improvement totally in my legs going to help me get around with just a stick ? I am doubting it, as my legs have the worse nerve damage.

But what is the point of getting a mobility aid if I would be stuck in the house all day with it because of the stairs outside.

Yes with a handrail I could walk slowly to the pavement and then have a rest to get the energy back to climb the stairs back to the house. I couldn't walk on to the corner shop or the kids school or my friends house.

Sigh, if I don't have a ramp, I will never get out anywhere unless DH takes me out. Once everyone is back at school and work I don't want to sit here on my own every day. I want some independence, even just a little part of something to look forward too.

You need a ramp for if you need to use a wheelchair, once you get your PIP sorted you will be eligible for a disabled facilities grant towards any alterations you need, downstairs toilet, doors widening, wetroom etc. Your OT from the council would be able to help you with application forms.

The OT didn't want to pay for a ramp. She said we would have to pay because it is not a council house.

Ditto we are not eligible for grant's from council as I have access to one bedroom and one bathroom, that is all they fund.

If I could get the ramp sorted that would be great.

My exh had MS, so if you need to know anything about adaptions or aids, just ask x

Also our council don't fund chairs or scooters for outside use ! So in top of the ramp, we would have self fund wheels too. Being chronically ill is expensive or is it disabled....I have no idea at what point you move from one label to another. Sigh.

@Nat6999

My exh had MS, so if you need to know anything about adaptions or aids, just ask x

You are kind, Nat. Tbh the house is full of aids.

I just need to ask a friendly fairy to wave a wand and help make a ramp affordable, that would be wonderful.

Can I just say, that getting a mobility scooter has opened my life again as I can now access areas I havent been able to get to for years. I took a trip down the local high street from one to the other at Christmas and I havent been able to do that in over ten years, they are certainly nothing to down about getting. i kind of wish I had got one earlier. That and a blue badge. Now i less worry about if I cant park close, i other options.

I agree about them always being shown on TV adverts as old people. Us younger folk have mobility needs to!

My current quest is a lightweight sparkly walking stick. Anyone seen one?

Anyway @Worrysaboutalot I wish you well with all your trips to the hospital and that you look upon this as just another maybe unforeseen chapter in your life. I keep trying to, but I do understand the sadness in getting these aids and its not the life any of us would have wished for.

If you get enhanced mobility on your PIP you can have either a car, mobility scooter or an electric wheelchair, if you choose to have a car, you can pay £100 & have a lightweight manual wheelchair as well. If you need a wheelchair permanently then the NHS will pay for one, my exh got assessed for one before he stopped being able to walk, we had it for ages stuck in a cupboard until he needed to use it.

Do you have a front garden? Just wondering if you have room for one of those plastic cupboards/small sheds, that you could store a scooter or wheelchair in.

We've got one that's about 4 or 5 foot long and about 3-4 feet high, for our recycling bins, but my scooter would fit in it if we took the shelf out. You can then keep it padlocked.

What's the problem with the ramp?

Motoko
The front garden is as high as the top step, it is a raised garden. So I would still have to negotiate the steps.

The problem with the ramp is three fold.

1. The council would rather I have handrail on the uneven stairs. Already said no to my suggestion of a ramp.
2. DH agrees with them that as I don't have/need scooter/chair, the stairs will he fine.
3. I am not 100% sure I will need a ramp but I worry I will do. The consultant said the nerve damage in my legs is permanent but mentions 10 to 20% improvement. Can I even get improvement in my legs ? I need to wait three weeks and see. All I know is if I stay the same as I am now, without a ramp and an mobility aid I will never be able to go anywhere outside the house :(

And with DH attitude I am worried that he won't support me if I still need an mobility aid after the steroids treatment. He seems to not see how hard everything is for me walking wise.

Nat6999
Thank you for your good advice. However it will be 6 months before the Pip Reassessment takes places and then I will have to attend a centre and go through my answers. It could easily take 8 or 10 months before I get a result and maybe an appeal on top of that. I can't wait that long before leaving my house. I will go crazy on my own in the house from September, I am dreading it.

But if I somehow had a working ramp and a mobility aid, I could have a wander around the village and that would really help me.

Pericombobulations

I love your attitude about getting out and about. Yes, it is a shame all these aids are so aimed at the elderly. But I do see why, the elderly is a bigger market share.

I will keep an eye out to see sparkly walking stick.
I have this black and orange one which I think is fairly modern

Oh tricky. I hope DH comes round and sees that you need to be able to get out. It would be to his benefit too, so you're not as reliant on him.

@Worrysaboutalot Thanks. I'm four years on and in some ways it gets easier and others it doesnt.

We havent yet had to make the house wheelchair accessible but I've spent the lockdown decluttering in the knowledge that it may be needed.

DH has moments of being very supportive (he agreed I should buy the scooter - second hand for about £500 - see if you have any local mobility shops as they get second hand ones in to resell). But he also has utter let down moments. I'm still very unsure if he will be supportive or not. Only time will tell.

And thanks for the stick, I hadnt seen one like that before.

I know what you mean about being stuck inside, I've been at my mum's since Christmas, I haven't been outside since March, my flat is totally unsuitabke for me, there are 6 steps outside to access the block, bins are at the top of the steps, i need a walk in shower or a wetroom, the door in to my flat is in a corner with less than a metre of turning space which would be no good for a scooter or wheelchair, there also is nowhere in the flat to keep a scooter. I'm hoping that the council will agree to moving me to either a bungalow or a house with a stairlift.