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?

Nat6999

I hope you get your housing sorted and get outside soon.

Pericombobulations
I do really like the stick, but the folding version has bad reviews I have the telescopic version and I like it. Plus I can just buy another stick foot, when this one runs down.

I hope your husband remains very supportive, we need it more now don't we.

@Motoko

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.

Tbh It was the shock of not being able to get a ramp, that made me realise that I DO need a mobility aid and no ramp means I can't get outside and I am still trying to figure out how I feel about it all.

Whereas my husband just hadn't thought it through. He told the builder that I needed a ramp to shuffle down it, like I did in the house. But the only way I can shuffle on the floor in the house, is many things to hold onto and I only wear socks. Whereas outside there is nothing to hold on to and I need to wear shoes, which makes walking a billion times harder.

I guess if I am struggle to accept needing a mobility aid, DH is going to struggle more with accepting it too.

We both need time to think about it.
Plus I need to see how much improvement I get with the steroids. Tomorrow is dose 4 out of 6.

Good luck to Tomorrow x

What side effects are you getting with the steroids? I'm fully expecting to have to have them once I have seen my consultant & had the MRI & Nerve Conduction Tests.

Thank you working

Nat Metallic taste in mouth, pain in my arms, wired mood, no/hard sleep. But the pain in my arms might be my body damaging my nerves in my arms. I need to ask my consultant about that.

Week 4 done. Low points when one canula attempt hit a nerve, I think. Leading me to shout out in pain and grab my arm. Pain down and up like a lightening strike, very unpleasant. Hope not to get that again.

High point, at this time in two weeks I will have finished. Hurrah.
Plus another shout out to the volunteers, very helpful both to the treatment room and back to car park. They really are making a big difference to me, so I don't have to struggle on foot. Plus we have to use a different hospital door and it would of been an even longer walk !

My exh used to suck mints when he had the iv steroids going in, he craved salt & ate nothing but salt & vinegar pringles & tomato sandwiches with loads of salt on. Have you put much weight on? That is one thing that really worries me as I am already very overweight.

Ooh, that sounds painful (the canula). I hate having canulas put in, they always have trouble with my veins. Still, it's over with today. Glad that the volunteers are helping you, one less thing to worry about.

Nat6999
I can't suck mints during treatment. As they test my blood sugar before and after the iv. And sugar free mints have a bad effect of my poo, yuck.

I am losing weight at the moment. Can't stand up long enough to make food for myself and as I can't feel my stomach, I never feel hungry. I usually just have a tea around 6pm that DH cooks and I drink water the rest of the time. I have lost 33lbs since April but as I am very fat, losing weight will only become a problem next summer. I must be the only person to lose weight in steroids, lol.

Motoko
The canula was painful but if the steroids start working in the next three weeks it will all be worth it.

I am so lucky to have the volunteers help. Do you think I could give them a thank card and box of shop sealed chocolates or similar on my last lift ?

Forgot to say I have a turntable pillow which is helpful getting me turned around on a dining room seat. Though I still need to remember not to pull the chair in and I need my stick and to push on the table hard to get up. Not perfect but getting there.

I am also using this turntable cushion on my journey to/from hospital. On the way there I also used a car cane a handle for the car door together they worked much easier in my parents car.

But on the way home the car cane wouldn't work in our car, which was upsetting as our car is higher and harder to access.

So after spending £25 on the turntable cushion and £15 on the car cane I spend ANOTHER £15 on a different car cane which we think will either fit or at the worse partial fit into our car door loops.

Yet more money !

Plus my youngest daughter nearly 8 yo came to talk to me yesterday whilst I was getting my pjs on in my room and she said she didn't like these new things, pointing at the bed sitter upper, in the house. That she wished I had never hurt my ankle (referring to when I fell down the stairs at the dentist last year and was my last big fall), she didn't like all the pills I was taking and when would I be better.

I can't remember how much I told the youngest two already.

The oldest two know I have a neurological condition and it may or may not be mended and just bare with us, until we get more answers.

We did speak to the younger two but my bad memory means I can't remember what we told them. Only it would of been truthful but simpler as they are younger.

Last night I just gave her a hug and said I know it gives me a jump when I see these new things in the house. I said the name for them is aids, as they help me. As long as I need the help the aids have to stay. As for getting better that is why the doctors are giving me the pills and why I go to the hospital on Thursday, to try and help me feel better.

I will ask DH what we told the younger two and check up on what DD2 thinks and if she is worried too.

Yeah, being disabled is expensive. I've never heard of a car cane.

It's so hard telling children, how much to tell them, and how to say it, without making them worried. Mine were all adults, luckily, and my 2 sons were living with us, so they knew what was happening.
It must be quite scary for your DD, with all these strange new things in the house, and mummy not being able to do things.

I would think as long as the box of chocs is sealed, it should be alright, and I'm sure they'd love a card.

This is a car cane
You put it in the frame of the open car door and lean on it to get in or out. When it fits it works well. Second one will arrive today, wish us luck that it fits our car.

I understand why little DD3 is worried. She really wants me to say I will get well soon but the truth is we just don't know.

Glad you think a sealed box of chocolates and card would be appropriate. I will get them ordered on the next shop.

Lastly I am unsure what to think about this last point. So leave it here for your comments.

The GP phone appointment happened this morning, as I have been getting break though pain and although is not very bad it is increasing. Plus my arms have been painful for last two weeks and I checked with clinic doctor yesterday who didn't think it was a side effect of the iv steroid treatment.
I wanted to know did the arm and increased feet pain mean the nerve medicine wasn't working as well, or was the pain more and if the pain was more did that mean the iv steroids were not working.

She asked a few questions I answered them in an honest way and thought I sounded pretty positive considering.

She wants me to take an additional small Gabapentin. So I currently take 600g three times a day. She wants me to start 700g three times a day.

She wants me to ring the Consultant's secretary and ask him.

She also thought I would benefit from a clinic next week (being run on telephone) to help support me. Sounded ok so I agreed, she tried to book me on the clinic then and there but it wasn't up yet. So asked me to ring the clinic on Monday and ask to be booked on

Motoko Do you think I am disabled ?

Well, you are at the moment, plus it's quicker just to use the term disabled. Also, aren't you already getting some Pip? That's for the extra costs of disability, and you wouldn't get it if they didn't think you were disabled.
We don't like to think of ourselves as disabled, because it's become a loaded term, with all the media going on about benefit scroungers etc, but I've come to terms with it now. I do worry what will happen if my DH becomes really ill, such as with covid, because I can't cook any more (I used to love cooking, was always baking bread and cakes, cooking dinner from scratch, making jams and chutneys. It's been hard coming to terms with that.). When I came out of hospital in April (my kidney had sepsis and stopped working) I was so much weaker than I was before, and had carers coming round twice a week. I hated it. But I'm back to my previous strength, so getting up the stairs is fine now (I still need to sit down when I get up there though).

Try not to think too much about the clinic. Give it a go, it might help. I thought my mental health was fine, but a couple of years ago, I got back into making art, and I felt so much brighter, that the previous years seemed so dark. Unfortunately, my hospital stay made me lose my mojo, and I haven't got back into my art since then. I'm hoping it comes back soon. I'm going to take some of my art stuff on holiday, hoping the change of scenery gives it a kick!

Thanks for the link to the car cane. I'd never seen them before. I don't need one yet, but I'll keep it in mind for when things get worse. Fingers crossed this new one is the right size for you.

I'm back from the hospital, my consultant thinks it is inflammation of my central nervous system, I have no reflexes in my lower body & significant weakness. He has ordered a head & spine MRI & Nerve condition tests, he has said he can't rule out MS.

Motoko It does sound that I might be when you explain it like that, I just think of myself as unwell. I did wonder when unwell tips over to disabled. Not easy to accept for sure. I would worry that people would say you are fine, no way YOU are disabled. Yet I need so much help these days. Something to think about for sure.

Yes, there are too many negative stereotypes about people with disabilities. But the worse thing to accept is permanent issues. If my legs come back I would be so grateful. We don't appreciate good health until we lose it.

I am also worried about post Covid and when I have got as well as the steroids allow. Will I be able to find a job. I was looking before lockdown but hadn't got any interviews. Daft but I worry if I had to use a mobility aid would anyone employ me. But that is future problem.

Yes, art sounds like a very uplifting hobby. My friend says she will teach me to paint and I am going to take her up on that.

Sounds like the hospital admission really took it out of you. Accepting carers in your home sounds very difficult. But if you need them, you need them.

I would highly recommend a stair lift. I might of cried when it was installed. But I can go to the bathroom and return downstairs, without needing a sit down and rest. Ring around and ask the shops if they are removing an older stair lift that is normal scrapped and see if they will help. Honestly it was the best £500 we spent.

@Nat6999

I'm back from the hospital, my consultant thinks it is inflammation of my central nervous system, I have no reflexes in my lower body & significant weakness. He has ordered a head & spine MRI & Nerve condition tests, he has said he can't rule out MS.

Nat6999, I am sorry that a problem was found. But it sounds like he is taking it seriously and putting you forward for more testing.

How are you feeling?

I'm shattered, it's the first time I have been out since beginning of March. I was terrified this morning that I would have a fall, but I managed with ds helping me. I just feel sorry that he has two disabled parents & the fact he has been a carer since he was 6 years old.

You know, one of the things I really miss doing, is walking along a beach and looking in rock pools. Feeling the sand between my toes and having a paddle. As you say, we take these things for granted, until we can no longer do them.

Look up Art Journalling on YouTube. There are loads of tutorial videos on there, and you don't need to know how to paint, or be good at drawing. I can't draw or paint realistically, but I love playing with colours, and even using my fingers to paint! It's great fun!

Nat6999 Be kind to yourself. How old is DS now ?

Motoko
You are reading my mind. I was thinking about all the beaches we have visited in North Wales and trying to figure out how to get on the beach with my legs as they work atm. I might get on to the beach but like you said, no walking down to the sea and no rock pools.

Would I be able to walk on sand at all ? I have to be super careful not to cut my feet, so would have to wear some kind of water shoe or sandals.

I would have to take a seat as I could not sit on the beach. Well I could sit but not get up again.

In fact thinking back to last year. I did sit on the beach and I had terrible difficulty getting up again. So much so, I decided I wanted to sit down a bit longer before struggling again. I thought it was just being fat with my poorly ankles. But now I know it was this neurological condition progressing. Hind sight is 20:20

Thank you for the art suggestions, I will have a look at them.

I live for visiting beaches too, and more places have a sandchair for hire. If you go to the same place, google local mobility places and see what they have for hire. I use one in Wadebridge as we dont have room for my scooter as well as all the suitcases. I havent needed one yet as can walk slowly with my stick but its an option if my mobility gets worse.

www.cornwallmobility.co.uk/how-we-help/out-and-about-mobility-aids/beach-wheelchair-hire-in-cornwall

Worrysaboutalot He is 16, 17 in January, his dad was diagnosed when I was 8 months pregnant, went to work on afternoons & went blind on the way to work, we spent 7 weeks messing about seeing doctors & then paid to see a consultant, he had the MRI on Christmas eve morning, by 1.00pm he had been diagnosed with MS, we divorced when ds was 6. Ds has done everything from having to ring for ambulances to picking his dad up off the floor, he is a lot more grown up than most 16 year olds.

Pericombobulations

I never heard if sandchairs what a brilliant idea. Thank you.