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?

Give it time, you've got a lt to get your head around.

Motoko

The council help aids were delivered today. I am grateful but also very sad. This wasn't how things were meant to go.

Yeah I bet it’s gutting to see them all in your house.

@ThickFast

Yeah I bet it’s gutting to see them all in your house.

Yes, very

Thanks for the flowers!

Yeah, you know that the aids will help, but it's still depressing seeing them. They're just a constant reminder that you can't do the things you took for granted before.

I was shocked when I went to the bathroom this afternoon and resaw the new things. I guess I will get use to it all in a few days. And the bath board is going to better use than we thought.

I can't make my mind up if these things make me feel 80yo or 3yo. The bed sitter upper reminds of a cot and I didn't even use cots with my babies we coslept. Ha ha

When/if I get better it can all go back again. But for now, I need it.

I finally got to speak to a consultant last week, he is transferring me to his NHS clinic as he needs to examine me & I need Nerve conduction tests & an MRI. He said I should hear within 2 weeks. I'm like you getting worse, I only came to my mum's for 3 days over Christmas but haven't gone home yet. Once I get some kind of diagnosis I will need to move house as the flat I have isn't suitable for me. Luckily my mum has a stairlift, walk in shower, grab rails etc, I have had to buy a set of crutches as my walking is terrible now, my balance is so poor. Have you had any response from your steroids yet?

Nat6999 Getting the mri and nerve conduct tests is a good step. Hopefully one or the other will give you the answer as to what is wrong.

No effect from my steroids yet but I have only had two doses and I need between 4 and 6 before any improvement can be seen.

It’s such a lot to process and cope with - you are doing so well and in the meantime the drugs will be quietly working away. Use everything that makes your life easier...I remember sitting down and writing a long list of all the changes I needed to make, and somehow it helped to go and buy shoes that didn’t hurt my feet and still looked pretty, for example.

Yes, I should make a list of what I need. Tbh whilst DH works from home and the stuff the council lent me, I think we are going ok.

The bed sitter up helps me sit up and turn in bed and is also doubling up as a standing aid whilst I get dressed.

The bath board works well and I can just reach the soap/shampoo dispenser. I just need a lower shower head bar/holder for me to use whilst I sit in the shower. Plus a hook for my sponge lower down too. Showering is still tiring but it is a lot easier sat down by miles. Trying to see these new additions to my house as things to make my life easier whilst I heal.

My remaining biggest issue is outside. Spilt into three parts. Getting out front door. Getting down steps and onward travel.

1. Getting out front door which is a wide deep threshold is currently only possible with my husbands help.

2.Getting down steps ditto husbands help.

1. Onward travel is on hold atm. I can't sort out a suitable car or other mobility aid, until I know where I will be in 4 weeks time.

OT is going to add grab bars outside the front door and a half step and a handrail along all the steps outside.

I had a think and I rang back to ask if we could pay for a cement ramp from top of door to the pavement instead of more steps. Just in case we need it. Anyway a ramp with handrail will make it easier for me to walk down with a walker or stick or whatever I need to use. Waiting for a quote to see if it affordable.

I checked where pals is up too. Apparently the clinic manager will ring me later to discuss if they can ask a volunteer helper to support me.

I really don't mind who helps, as long as I can borrow a hospital chair and be pushed to my appointment.

Just hope they ring back. Apparently it will be today or tomorrow. I am panicking that nothing will be in place for Thursday. But hospital use their own timetables, so I will strive to be patient.

No news on the missing letter. Guessing we won't get one.

Oh and I need to ask the OT about dining room chairs.

While I have been very unsteady my DH brings my plate to the sofa on a tray, instead of eating in the dining room.

But at the weekend DH, me and the kids were at the dining table playing board games.

I felt really uncomfortable and I wanted to get ho to walk back to the sofa. But I couldn't move. I couldn't stand up with my stick. Couldn't swing my legs to the side or anything. My DH had to drag the chair backward and bodily lift me to standing and hold me for a minute to get my centre balance wise. Not sure what went wrong, me, the chair or what. But it was highly unpleasant.

Plus pretty shoes sound fab, might have a quick look for some :)

Pretty shoes is a great idea. A couple of things I did, to make me feel better, was to start wearing perfume everyday. I signed up to the Perfume Society's VIP thing, and ordered their boxes. The boxes have several sample size perfumes, as well as a couple of other items, such as hand cream, nail polish, or a bar of chocolate. The boxes are a really nice treat.
The other thing I did was to wear nail polish. Hadn't bothered for years, so it was really nice choosing a colour and seeing it on my nails.

Something I've just remembered, I think the Red Cross hire out wheelchairs. Perhaps you could hire one, until you know if this is going to be a long term thing and need one permanently. It's also worth asking on Freegle/FB etc, if anyone has an old wheelchair they don't need. My first wheelchair was given to me by someone at my DH's work. They'd had it for their mother, who had since died, and it had been gathering dust in their garage ever since.

I have looked at red cross and ebay. However as my arms are not strong enough to self propell myself the other type they rent are for someone to push me, like the hospital chairs.

I currently haven't got anyone to push me and if I get someone (everything crossed). I might as well borrow a hospital wheelchair, as that that costs me nothing. Where as a rental will cost be £15 a week, or £60 for the next 4 weeks.

I only leave the house once a week for treatment. I have no where else to go at the moment.

I am only looking 4 weeks into the future, I should start seeing some improvement from the steroids by then.

My consultant has rung me tonight, I will be seeing him a week on Friday on the NHS.

Good luck for Friday Nat

Have you any advice on what questions I should be asking at my consultation? I'm terrified my mind will go blank & I won't know what to ask.

Honestly Nat, until the tests have been done and results are in, what is there to ask about ? This first appointment is likely go ge tests for you. Take your history, take some blood and maybe check your reflexs.
Why not start a new thread in health, everyone loves a new thread to read (I do to) and if you are the OP of a thread more people will read your query and answer it too.

I have just had a frustrating on both sides talk to the hospital ward manager. He didn't understand my problem, I explained that my shielding parents dropped me off at the foot of the ramp and my difficulty was moving from that point to the treatment room and back. Where he thought the problem was getting from my town to the hospital in another town.

He demanded why I didn't have my own wheelchair. I pointed out that the treatment I was trying to access, hopefully means that in 4 weeks I might not need one.

I also pointed out that I had looked at getting a manual (rent or buy) chair but I couldn't propell independently, therefore would still need someone to push it. Hence my problem.

I suggested a porter, he said they were too busy with hospital work.

He then gave me a volunteer phone number of people who might be able to help me with a few days notice.

Then he sounded sheepish and said oh your next hospital appointment is tomorrow and I agreed. (Shame I didn't get the volunteers number earlier)

So he gave me another number (his ? Or the ward ?) to ring if the volunteers couldn't help me.

I feel drained, this is ridiculous. I shouldn't be begging for help of this arrogant man. He had already decided I was being unreasonable before he called me blustering. I am hoping that by the end of the conversation he understood what my issue was and that this would be a temporary 4 week issue hopefully not to be repeated.

I wish it was a woman calling me, they have more empathy.

Managed to get though to the head volunteer a lovely lady. Who is sorting out help for me over the next three weeks, including tomorrow!

I am so grateful for these help, I am gutted that I need it. Sadly it is showing me that if I don't get enough improvement, I will have to invest in an mobility aid outside the house. But still three weeks to go to see how well I get.

I'm so glad the volunteer people can help you, including tomorrow.
I had the worry of how to get to the department I needed, a couple of weeks ago, when I went for a scan.

Luckily my appointment was quite late (4pm), so because there weren't many patients around, they let my husband push me there and allowed him to wait for me. But I'd been worried about it since I'd got my appointment through.

I've just spoken to my oncologist, and it's good news. The scan shows that the cancer hasn't changed since the last one, so no chemo needed yet. Next appointment is in 6 months. I've been so lucky, my last lot of chemo ended in January 2017. This is the longest I've been between chemo cycles.

All the best tomorrow.

Motoko So pleased the hospital let your husband into your appointment. I am glad your scan gave good results :) All the better for your husband to be there to give emotional as well as physical support and this time to share the joy of a good results.

It really is a different world out there when you are unwell and need mobility assistance. Everything has to be planned for and help source if required. Even thinking locally there are so many shops I couldn't get in with any mobility aid.

May I ask, why you have a manual chair rather than something self powered ? Ignore this question if you like. At the same time of assuming all will be well with my legs in 4 weeks (get that head firmly into the sand) I am also looking at possible options if I need them and wondered why many people use manuals or is it cost, easy of folding etc.