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?

I already take Alendronic acid and Adcal to protect my bones, I hope I don't need more pills!

I am no inspiration. I am just an overweight middle aged woman getting on with things as there is no alternative.

I am lucky enough to have a very supportive husband and kids which really helps and a lovely bright new wardrobe, which makes me smile too

I have just checked the status of my driving license online, with the link the DVLA people emailed me.

It no longer says license expires April 2020 and now says Full license until November 2025.

Which must mean that the DVLA have reissued me a medical license, mustn't it!

So my actual physical license should arrive 1 to 2 weeks after it was reissued, so will arrive in plenty of time for the mobility car's arrival in January!

I am very relieved.

I have my medical driving license!

I have it for five years and then I have to renew it.

I am so very very pleased. So when the mobility car arrives in January, then I will be free and independent.

@Worrysaboutalot

I have my medical driving license!

I have it for five years and then I have to renew it.

I am so very very pleased. So when the mobility car arrives in January, then I will be free and independent.

Fantastic news!

Thank you :)

My door installation was cancelled and rearranged. I knew the door fitting firm were mega busy and I have been ringing every week (as agreed) to see if they had any cancellations.(they didn't)

They know I can't leave the house until I have the new door. They are trying their best.

I am frustrated at another minimum 2 week wait but better a busy firm, that came recommended. I am happy to wait for the job to be done right.

I just want to get out of the house on my own. So my patient DH will have another two weeks of carrying my chair over the door threshold and then helping me.

I just want a bit of independence.

I also feel a bit detached today. Last week my consultant told me that the Covid vaccines won't work on me, as he has stopped my immune system from working.

I don't know I feel about that. I am not sure what that means for the future. Am I going to have to stay home anyway to avoid Covid?

I am going for a shower and then to bed with an old favourite science fiction book which holds no surprises, just an enjoyable read.

I know next to nothing about vaccines and immune systems, but I saw this article the other day. It may be completely irrelevant, but thought I would share anyway: www.bbc.com/news/amp/health-55022288

Thank you @MurrayTheDemonicTalkingSkull that looks promising. I will ask my consultant about it in February. As first results are out in Spring that timing will work nicely.

I am so sad today.

I bought myself a coat that I had been looking for a while. When it arrived today it was just a bit small but will be fine by next year.

However I was thrown by the large fabric covered buttons at the front of the coat. I really struggled to undo/do up the buttons and I can't wear a coat that I can't put on or take off :(

I am so sad of sorting out one issue, only to have two more problems spring up in it's place. Issues that a minor and things everyone else does without thinking.

I am so sad that my hands will not cooperate properly, my legs are numb/cold/painful and I have strong random muscle spasms which upset me. I smacked my phone into my own face, whilst taking a call last week.

I have had enough.

I can't leave the house because the new door was fitted but the door closer thingy won't be here until mid January.
Plus the mobility car won't be here until mid April at the earliest.

Though both those things are irrelevant, as I can't get down my wheelchair outside ramp until the snow goes.

My Facebook pages are full of local parents taking their kids out to enjoy the snow and I can't do that with my kids ever again. That makes me sad and angry at myself.

This is my last straw...coat buttons and the snow. 😥

I’m really sorry to hear this, @Worrysaboutalot. Is it the fact the buttons are fabric covered or are you struggling with buttons in general? A tailor would be able to change them out for you if plastic ones would give you better grip, or there are button hook devices to help you do buttons if it’s your dexterity.

I know it’s totally shit to have to think about these things and it doesn’t help seeing other families out in the snow. I’m so sorry you’re having to go through this. Thinking of you.

@DonWeNowOurPlagueApparel

I’m really sorry to hear this, *@Worrysaboutalot*. Is it the fact the buttons are fabric covered or are you struggling with buttons in general? A tailor would be able to change them out for you if plastic ones would give you better grip, or there are button hook devices to help you do buttons if it’s your dexterity.

I know it’s totally shit to have to think about these things and it doesn’t help seeing other families out in the snow. I’m so sorry you’re having to go through this. Thinking of you.

Sorry, I didn't reply earlier. I was so distressed that day, I just unwatched my own thread!

I think the solution would be to add another panel underneath with the coat buttons sewn onto top (and buttoned into the original button holes) and velcro underneath and matching velcro where the buttons originally were. So it would still look like buttons but would be a velcro job.

If I can find someone to do it but that is a problem for much later this year.

Anyway about from struggling to home school all my kids which I am trying to forget at the moment.

I have welcomed my new front door, along lots of tech to close the door behind me and another to hold the door. So I now have the freedom to leave my house any time I like !

I am struggling to open the door to get back in, but we are going to change around some of the tech settings and I am going to practice again and see if I do better next time. My stupid weak arms. Sigh. But we are so close to getting this bit ticked off the list.

Plus we are investing more money in further aids for the bathroom. I am slipping way too much. So we are looking at putting up more grab bars and replacing the plastic bath board (which is near impossible to clean all the slats on it and hard to place and replace) with a coated metal fold up one which is stupidly expensive but we need it.

Gosh I remember worrying about buying a shower mat not so long ago and now I shop in online accessibility shops! How things change!

Any how, I am feeling stressed but more upbeat. Really missing my friends. Hope to have a socially distanced walk with one of mine later in the week, as exercise. No sitting on benches, lol. Not a problem for me, I come with my own chair.

I have a repeat nerve conduct test and my second covid vaccination this coming week.

The covid vaccination is welcomed and I didn't have any side effects (except a sore arm) after the first one, I hope to have similar good luck this time. I have only a 4 week gap between my vaccinations as my consultant said this applied to my neurology condition.

But I am very worried about the second nerve conduct test. I found the last test very uncomfortable and it wiped me out for the rest of the day and the day after I was very comfortable too.

However I know what the test entails this time, so I am prepared. What I am not prepared for is the results!

My consultant has been clear that there are two scenarios, either the nerve damage remains the same (best result) or the nerve damage has got worse (worse result).

I know worrying will not make a difference but I am both desperately hoping the nerve damage will be less, that I will be healing. Even though that isn't even an option.

Then equally worrying that the nerve damage will be worse.

I am trying to concentrate on the likelihood that things will be the same (best result), this is what the consultant thinks and he is the expert.

I will get through this week and then just a three month wait to see my consultant to get the results!

However I am enjoying leaving the house when I like and walking (rolling) around the village on my own or with the kids. A small piece of independence which I really value
Only a month or so until my mobility car arrives, how great will that be. Then I will able to leave the village on my own too :)

I am getting my mobility car next week!

I am both so excited and terrified at the same time. Really worried about driving with the hand adaptions but everything will be fine. Once I get over my anxiety and get my first drive out of the way!

I have just noticed the dates. I started this thread a year this month!

Amazing how much things can change in a year. OK. It wasn't how I wanted things to go but I am working on making the best of things every day.

First step learn to confidently drive this new car.

Next step, get a good job (or a starter job to be getting on with).

Then book a cheap accessible UK holiday for my wonderful DH and our lovely kids. We all need a relaxing break away next year