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?

It is very hard to come to terms with, especially when you were able to live a normal life before. My mobility is limited now (I've been living with cancer for nearly 8 years) I can walk from one room to another, and I can do the stairs (with a sit down at the end), but I have to use a wheelchair when I go out, and have to have my DH with me. He now does all the housework, looks after me, and works full time.
I used to love going for walks in the countryside, or on the beach, but they're not wheelchair friendly. It took me several years to come to terms with. I know exactly what you mean about devices to help the disabled, they make you feel like an old person, and they're designed only to be functional, no thought goes into the aesthetics, or that a young person might use them and want a range of colours, for instance, to choose from.

I wonder if some physiotherapy would help you, along with your treatment?

Motoko You are right, everything is designed and aimed at the older population.

And yes, I am struggling to get my head around everything and still hoping that a 20% improvement would translate to a lucky 100% improvement for me.

But the one thing I can't ignore now is the stairs. The outside stairs I can get my DH to help me up and down. But our internal stairs are too narrow for any help to be possible.

I have to pull myself up using my arms. Using a shelf and door jam as support and a small rest half way up.

Even coming down is hard work, mainly trying to slow down my descent and praying my feet are all safely balanced on the next step down.

I am looking at getting a second hand stair lift off EBay and get DH to fit it. :(

I can't face the fact I need it but I can't be terrified everytime I face the stairs !

I hate feeling this way :(

A stairlift, if you can get one, would be a good idea. I completely understand your worries about using the stairs.

Not sure where to try and get one. We need to make sure it is safe. Well, that is a problem for next week.

We are getting a stair lift Friday !

Managed to get a cheap one via a local mobility shop £500 with fitting and a short warranty. It was super good timing.

I feel very mixed about the lift. I don't want to need it but the stairs are far too dangerous for me at the moment.

My DH saw me coming downstairs yesterday and he was horrified at how far forward I was leaning. I was unconsciously leaning forward in order to watch my feet so I could place them on the next step. But as my arms are weak and my grip gives way at random times, I could fall and break my neck. So I now bump on my backside slowly down the stairs watching my feet placement with one arm on the banister. It might be undignified and hurt my backside but better to get down safely.

On the plus side the lift will not only be safer, it will allow me to drink as much water as I want without worrying about the tremendous effort currently needed to pull myself up the stairs.

And if I am super lucky and get a miraculous recovery in my legs, I can send this back to the shop for someone else.

Sounds great! It's worth the money to keep you safe using the stairs.

The shop lady is coming to measure the stairs today, just to check our measurements and will send the installers with the actual thing on Friday.

1st iv steroids done 5 or 7 or 11 more to go depending on my blood sugar levels and if I see improvement by week 6.

I am so tired as I didn't sleep last night, but also feel a bit wired, I have a funny taste in my mouth and my tinnitus is driving me crazy. Tinnitus is probably from all the beeping machines I

Wonder if I will sleep tonight ? The doctor warned me I might not ? Oh and I am on the offical shielding list Corona wise but as I only leave the house for hospital nothing will change for me.

Well done. You will feel wired and probably ravenous but they will also make such a difference!

I will be interested if I will eat more at tea, as I currently can't feel my stomach.

I think I will sleep downstairs, as today's doctor said I was likely to not sleep much tonight.

Stair lift fitted tomorrow, that will save me bumping down the stairs on my bum..ouch.

Next week Council is sending someone around to see if they can help me with loan of equipment. Not sure exactly, what I need but hopefully they can help. My hope is that they help flatten our front steps and add a handle rail or can direct us to cheap but safe companies to do this for me. So I can leave my house !

Q1. Plus my pip form arrived, not sure if to fill out (40 pages !) the form this weekend OR wait to see what the council people offer items wise before I fill it in ? Any thoughts ?

Also filled out the blue badge application, as it will be a billion times easier to get me to and from hospital, as the yellow bays are right outside the doors with dropped curbs.

Atm my DH drops me off as near as he can whilst blocking the road and I struggle to get out of my seat and safely to the pavement...it is the little things which are so maddening when you are unwell.

I am hoping because I am pulling my head out of the sand and getting organised, that I will suddenly get better miraculous and then I will gladly cancel everything again, lol

Ask the council when they come round, if they have a benefits advisor who can help you with filling in the Pip forms, as they know what keywords etc, to use. Your chance of being awarded Pip is higher if an advisor can help you. Alternatively, CAB have benefits advisors, and it might be worth googling your diagnosis to see if there are any charities that support it.

I'm glad to hear that you've got the ball rolling on getting help.

I had to have steroids when I was on chemo, and they did make me hyper for a couple of days after. I don't know what ones they were, and mine were in tablet form.

Onwards and upwards!

Onwards and upwards! Indeed.

Tbh the mobility shop lady was very kind and persuasive me (told me) I had to ring council. She was very determined. Bless her.

And everyone I rung told me to ring another person afterwards. I was so surprised how kind and helpful everyone was. They all signposts to each other.

I told them all, that the consultant said I won't get much improvement. However I was still hoping to get an 100% one.

As I am worried that I will get help and then not need it it the near future....I hope.

They all said the same thing. That they would be pleased, if I ring back and tell them I no longer needed help going forward as I got better.
(clearly I would hand back what I can and cancel everything if/when I get better)

Thank you for your advice, I will ask them about the pip form. Though the nice PIP man said they have a 6 month wait (because of covid) until assessment so I will know for sure whether I need that help still or not by then.

My tea, cous cous tastes nasty, ditto my water.
Am I going to be like this for the next 6 weeks, or will to tail off ?

I forgot, I had bought a travel bamboo cutlery to try in case of nasty mouth and I forgot I had it next to me in its little bag.

I will try it tomorrow.

Plus I bought another massive pill box, I spent half my life trying to remember what I have taken. I text myself all that kind of stuff. This box will be a mare to fill but will be easier to use.

I am impressed with how much you have got done so quickly and am so pleased people are being so helpful. Sending you best wishes for a good night sleep - and even if you don’t sleep the drugs will be doing their thing, soothing everything down xx

WorkingItOutAsIGo

I asked for the pip form when someone on the thread suggested it. I didn't do that this week. Though I did ring the pip man this week to check return dates and if he thought it was worth me trying to get mobility help.

But everything else was sorted out this week ! I am amazed at how quickly they are helping me the council would of been out Thursday but of course I was in hospital, so had to rearrange to next week !

Thank you for you kind words. I am all settled in on the sofa with my CPAP machine and the tv on my headphones.

I will try and settle too sleep after this episode.

I managed to sleep between 2am and 7am, which is much better than I was expecting.
I think it was because I didn't sleep too much the night before.

So I will see how am tonight. I might try to sleep in our room, or I might stay downstairs again.

Think it would be sensible to sleep downstairs every Thursday while I am treated with steroids. Especially as the maximum treatment length at my dose is 12 weeks. I can do that.

Well stair lift was fitted today.

I hate needing it, but I was endangering myself everytime I went up or down stairs. So I am happy it will keep me safe.

I am hoping to get enough improvement from the steroids, as to not need it forever.
But if they stop me breaking a leg or worse by falling down the stairs again over the next few months, then they are worth it.

So I am happy/sad/excited/angry all at the same time, I am guessing the steroids are not helping my mood.

You've got a lot to deal with, and losing your mobility, on top of your other symptoms, will take a lot of dealing with. It's understandable that your emotions are going to be all over the place. Be kind to yourself.

I'm glad that you can now get up and down the stairs safely. It's one less thing to worry about.

Motoko Thank you I am gratefully about the stairs but I feel so sad too.

Am so relieved you have the stairlift. It will be a good help and hopefully only temporary. The steroids are working away and will help!!!

It must all be so overwhelming for you. And so hard to admit it to yourself in some ways. But let’s hope it’s all temporary and the steroids do their magic.

I feel in limbo.

Once I know how well I will get, I can start to deal with it.

But at the moment I have no idea if I will be 100% well all the way down to staying 100% as unwell as I am now.

I need to be patient for at least a few more weeks yet. Wait and see what improvement I get. I wish I was a more patient person.

Wow so sorry
To hear this hope you get it sorted! Is very strange cos I have burning on fire hands and especially feet. It aches so sooo bad to wear shoes. I already walk with crutches due to lumbar pain and I’m not sure that go has really figured out why this is. But one thing I’ve had for years is totally numb around legs just at/ above ankle. I can totally stick in pin and not really feel this. How odd🤔 anyway sorry, I hope you get the specialist you obviously need to help you 💐💐

RedOasis
Thank you. I am lucky to be under a nice neurologist and started a treatment of weekly iv steroid treatment. Just wish I knew how successful my treatment will be, but I need to wait.

I hope you have checked out your hands/feet symptoms with your gp/neurologist, just to be on the safe side.