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?

HAVE YOU CLAIMED PIP? you absolutely should be CLAIMING PIP. The payments could help you towards private medical costs? Check gov uk. Hope you get the help you need. I know hospitals dealing with emergencies but FFS if going numb from waist down and not feeling motions and not walking isn’t an emergency.... but we can all go to pradamark?!?

RedOasis
Thank you

Was just thinking of you; are you about to have your second lot of steroids? How did you sleep this last week?

Yes, second set of steroids tomorrow.

Last week I was up very late Thursday too wired to sleep and slept on the sofa Thursday and Friday night.

I will probably do the same this week. Then I can watch tv, if sleep escapes me.

I hope everything goes ok tomorrow, then I would be one more step closer to my possible improvement.

I set off at 8.15am for a 9am appointment and had to wait until 10am for hospital pharmacy to bring the steroids for me.
I was worried they had forgotten about me. Canula in and attached to nothing, but this is my only time outside my house, so I waited patiently. Everything went smoothly with my second dose...yeah [happy]

But the new location is awful.

There is a ramp outside, with grab bars.
Inside there is a massive corner double ramp inside to get up to the first level, no lift, only alternative is stairs, which I can't go up.
Then small corridor turn onto a longer corridor leading to reception and that is just the waiting room.

I wait and let my jelly weak legs to recover, as I really struggled getting here. Then a nurse does my temp and blood pressure before taking me down another corridor with no grab bars, so I leant one hand against the wall and my stick in the other hand. Then had to cross the treatment room to get to my chair with no walls to help me.

I struggled so much It shouldn't be this hard.

On the way back I crossed treatment room and down no rails corridor to the waiting room. Waited there for 20 minutes.

Then walked down hand rail corridor turn onto small corridor which had a bench here ! So I sat there for 20 minutes.

When my DH texted he was there, I got up and braced myself to go down the corner double ramp inside, then down outside ramp. I clung to the handrails at the bottom of the ramp with my stick and took two steps to get to our car.

I am so tired. Why am I finding this so physically hard, when the distance itself is not a long way really. But seems mountainous to me 😥

5 years ago, I was running outside the house three times a week minimum 5 miles up to 8 miles.

And now the thought of having to go back and deal with those ramps and corridor makes me so sad and angry. Sad I find it hard. Angry because it is not fair I should be find should an easy thing hard.

Maybe I am not trying hard enough ?

It’s not not trying hard enough. Not at all. It must be devastating to be going through this with no idea about recovery yet.

ThickFast

Feeling better now I have eaten with my bamboo cutlery which helps with the metallic taste in my mouth.

Now watching trash tv, lol.

But I think so have thought of a partial solution. There is a fire exit which staff was knocking on and the reception lady was letting them in this fire exit
One was a Porter who was emptying stuff to s trolley and bringing loads of stuff from his van. So there must be a nearby carpark.

So if we get permission to park next to the fire exit to be dropped off and picked up. That will eliminated 1/2 thr issue, leaving me a much shorter distance to cover.

They might say no but it is worth a try.

Also today on my return from hospital, I got a letter from my consultant fir another appointment in August and it location is in yet another building in the hospital.

I turned to DH and with a copy of the hospital map and pointed at the smallest building and I said that is where we started.

Then I pointed at one triple the size of the first one and said this is where I went today.

Then I pointed at another building triple the size of the second building (I kid you not)
And said this is wear I have to go in August does he want to kill me ?

So I need to find out toilets layout, how far to I have to walk, are there stairs, grab bars etc. All the planning is just endless.

However he can't triple the building size from now on, every other building is smaller, lol.

Where not wear. Sorry my evening painkillers make me slow and my spelling is a mystery to me, let alone any readers. But I can't sleep cause the steroids have me wired up.

I do really like the consultant, just in case the last post wasn't clear. You can really see him thinking and his knowledge is amazing. Plus he was so good and kind at talking though everything even though the things he told me are difficult to accept, he had a really wonderful genuine personality. I hope I get to keep him medically speaking, as I trust he will do the best for me. Whatever that best might be.

I was thinking about your consultant. Wasn’t he the first one who you felt really took it seriously? Was there one who dismissed it as not a neurology problem and referred you back to GP?

Defo ask about going in fire escape. Hopefully it won’t be a problem.

You will probably hate to hear this, but hearing you describe the challenge of walking means I have to suggest it - it should be entirely possible to arrange for a porter to take you to the clinic in a wheelchair. This is what hospitals do! It’s very normal and usual and sadly often needed for neurology patients. Please contact your consultants secretary or the hospital and it should be easy to arrange.

I was also going to suggest asking the hospital for a porter/wheelchair. It's not because you're not trying hard enough, if you pushed yourself any more, you'd probably collapse, because your legs just don't have the strength to hold your weight. I understand how you're feeling, as I've been through it myself. I now use a wheelchair when outside the house.

OP, Overhead your posts from the first posting.

I just wanted to say that the way you've been dealing with all is remarkable. You are showing such amazing resilience.

I can't imagine how hard it must be to cope with the emotional rollercoaster whilst trying to look after your kids during this time, even with a supportive husband.

I wish you more than anything that the steroids will work and do some repair so that you can go back to your old self

Yes ThickFast, this consultant is the first one to really believe that something was wrong. The nerve conduct test doctor was very kind too.

Motoko and WorkingItOutAsIGo,

I told your advice and rang Pals at the hospital. As I haven't got the letter off the consultant which he said I would receive woth his secretary details on three weeks ago.

So I asked the lovely pals lady to chase up the letter for me and the GP (who also haven't received it)

Then I asked about porters, so is going to have a word with the clinic in question and see what they can do. I feel terrible for finding such a short distance for a healthh person and yet so hard for me. :(

Motoko,

I try not to think to hard about the future. I am still so sure that this steroid treatment will give me my legs back.

But if I stay like this, then I need to accept that I will need some kind of mobility aid outside the house. But I am not ready to go there yet. Steroids can work really well for some people, maybe I will be the one.

dontdisturbmenow,

Thank you for your kind words. But honestly I think anyone put in my situation would do the same. You just have to take each day as it comes and live it, the best you can.

I am feeling a little down today. I had a OT sent by adult social services to help me.

She is going to put a frame around the toilet to replace my suction grab bars which are deemed not safe.

A bath board to help me in to the shower over the bath and replacing my two suction grab bars with permanent ones.

A bed thing to help me sit up and get out of bed.

Two grab bars outside the front door and a half step added outside the door to make getting out of door safer.

If we can get the stairs flattened they will fit a handrail so I can get to the pavement safely on my own. I am going to ring back and ask if they can flatten the steps if we pay them.

So she was brisk, nice, friendly, professional and clearly knew what would help us.

But it has left me feeling down, all these permanently changes to our home. I know I need these things atm but I am so scared that by having them and using them, I am going to make myself weak and I need to be strong to give the steroids the best chance of working.

This doesn't make any logical sense reading it back but that is how I feel.

Onward and upward tomorrow will be a better day.

You’re not going to make yourself weak. You’re making sure you don’t fall and hurt yourself. If you fell and reduced your mobility through and injury then that would be more likely to make you weaker. But I can really imagine it being hard to see all of this being put in your home.

Fingers crossed the steroids work, but in the meantime, it's good that you're getting all these aids to help you around the house. They won't make you weaker, and you can always ask about exercises that you can do.

Just take each day as it comes, and be kind to yourself.

The only exercise I can do is riding my seated horizontal exercise bike and on that I am struggling to complete 30 minutes of their easiest programme but I keep trying.

Hopefully I will start bring able to walk further or with less effort once the steroids kick in.

30 minutes is good, better than nothing. I've got one of those pedal things where you sit in a chair and pedal, and I can only manage about 5 minutes, if that.

Yes, whatever exercise we can manage is better than nothing.

I find it hard to get around the concept that my muscles are fine, it is only my sensory nerves which are damaged, therefore why is it darn difficult to cycle ?