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AIBU?

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Original poster

Anyone has experienced numbness of body and neurologyl

766 replies

Worrysaboutalot · 26/04/2020 10:48

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?

OP posts:
mrpumblechook · 26/04/2020 18:43

I hope you are right mrpumblechook. I would prefer to wake up better without the need to take steroids or have a scan.

You most likely will get better without taking anything. Steroids may help it happen quicker but they don't have an impact on the actual amount of recovery so they probably wouldn't want to prescribe them at the moment if you just have numbness.

BillieEilish · 26/04/2020 18:53

I am so sorry OP

I know you say it is not Guillain Barre, but I had this 4 years ago and these were my EXACT symptoms. Breathing was the last to go and I got put on a ventilator.

Honestly, are you absolutely sure?

If treated promptly it can be halted. Mine wasn't. I spent 5 months learning to walk.

Original poster
Worrysaboutalot · 26/04/2020 18:54

Thank you for all the helpful advice. Flowers

I will ring my GP in the morning and hope he/she helps me.

OP posts:
Original poster
Worrysaboutalot · 26/04/2020 18:56

BillieEilish I have no idea really. I have no medical training. I hope the GP will figure something out.

OP posts:
mrpumblechook · 26/04/2020 19:05

I know you say it is not Guillain Barre, but I had this 4 years ago and these were my EXACT symptoms. Breathing was the last to go and I got put on a ventilator.

Guillain Barre would cause weakness too and would be quicker, wouldn't it? OP has had this for a week and only numbness.

YappityYapYap · 26/04/2020 19:08

Sounds like MS to me. I'm being investigated at the moment, well was, awaiting an MRI. Currently taking beta blockers to try and reduce numbness and headaches.

My very first symptom was failing to hold urine and also burning of my feet. It's moved on since then and my symptoms tend to be spasms of my legs, weakness in my ankle which seems to just buckle randomly, neck strain, electric shock type sensations down my neck and spine and pain in my eyes as well as headaches and numbness in my limbs. I manage ok most of the time but see some days, I'm scared to move my neck too much for that dreaded electric shock type feeling and I can spend all day feeling like something is in my eye but it's not. Beta blockers help, they relax the blood pressure so the signals in your body become slower so sudden pain tends to not bite as hard

If you can see my old threads, you will see that a few months a go I fell flat on my face after my legs buckled chasing after my DS.

Chimpfield · 26/04/2020 19:10

I have exactly the same symptoms and I have functional neurological disorder (FND). Took months And every test known to man before I was diagnosed. Good luck, hope all goes ok for you x

ForInstance · 26/04/2020 19:12

OP, I have nothing helpful to offer you but just wanted to send you the very best thoughts and wishes. Whilst it’s understandable to an extent that services are swamped and prioritising Covid patients, that is only up to a point. I’m just recovering from Covid and whilst I was really quite unwell, I was surprised by how much of a priority I was. I would have put your symptoms before mine for urgent treatment any day of the week. Take care and I hope you get the help you need Flowers

BillieEilish · 26/04/2020 19:14

I understand, the thing is it is very rare, but not unheard of, but trying to convince a doctor is hard. They likely haven't even heard of it.

I have, in the past 4 years, done a lot of research on it. The man that wrote 'Catch 22' had it. It crept slowly, over a few weeks and reached his lungs and stopped. Another man, developed it more quickly and he got the plasma treatment and is largely unaffected.

With me it was over 5 days only and very quick onset. I ended up totally paralysed.

It eventually reached my cheekbones. Luckily not my eyes. It reverses itself in time but is terrifying and hideous, especially if they don't know WHAT it is.

Really, do insist on this as an option. The third reply was GBS and the hairs stood out on the back of my neck as I was reading your post and thought exactly the same thing.

Just before I called the ambulance poo was dripping out of me. Utterly horrifying.

I wish you the best luck in the world Flowers

It has been linked to Herpes Zoster Virus (chicken pox), Cytomegliavirus and Mononuecleosis. But no 'proof' any chance you have been exposed to these?

Either way, I hope it's NOT this, but just stressing, half my battle was proving it was this, after the event! To raise awareness.

I am not a doctor, I am just sharing my experience in the hope you can rule it out. If it was GBS you could knock it on the head, sharpish you see?

There are a couple of other threads on GBS on here.

TwoBlueFish · 26/04/2020 19:30

My first thought was MS as well, a friend was recently diagnosed after having numbness and burning in several parts of her body. I was investigated for MS several years ago but that was mainly due to vision issues. Ultimately you need an MRI, if you’ve already seen the neurological team could you maybe phone them and see if you could be seen again? Or ask your GP to do an urgent referral.

Private MRI scan of head and spine is probably £500-£600. If you have the money then I’d do that.

mrpumblechook · 26/04/2020 19:35

Private MRI scan of head and spine is probably £500-£600. If you have the money then I’d do that.

You need the NHS for treatment though so not really worth it for most people.

Original poster
Worrysaboutalot · 26/04/2020 19:41

Chimpfield What did you get diagnosed with in the end ?

OP posts:
Chimpfield · 26/04/2020 20:13

I have FND, dystonia and fibromyalgia. Numbness, weakness in muscles, big problems with my bladder and bowel, I never know when I need to go :(. My mobility is effected and I have problems with my speech, tremors in arms and legs, movement tics in my neck Not much fun...

Original poster
Worrysaboutalot · 26/04/2020 20:17

No, not much fun Flowers

I appreciate your post, whatever this ends up being.

OP posts:
Chimpfield · 26/04/2020 20:30

Forget to say, against my personal beliefs, sought out the top neurologist in the area and saw her privately - best £300 I have ever spent. She put me on nhs list for tests etc then I got my diagnosis.

Original poster
Worrysaboutalot · 26/04/2020 20:31

BillieEilish That sounds so hard to deal with. Glad you are feeling better now.

We don't have money for private scans, it would have to be a bank loan if we decided to go that route.

OP posts:
HollaHolla · 26/04/2020 20:42

I had Cauda Equina last year, and had emergency surgery, but that was my 4th spinal surgery in 4 years..... so I kind of knew what it was.
Before the first surgery, I was going numb in my bum, foot and calf, and because I was ‘too functional’, neurosurgery wouldn’t see me. I had a private scan at £375 (central Scotland) which included the reports back to my GP - who then insisted on me being seen.
Between surgeries 2 and 3, I moved area, and had a much better experience, but any numbness around the saddle, affecting the bowel or bladder, is always an emergency, and i think you did exactly the right thing, from my experience.
Good luck with getting this sorted - and don’t just ‘lie down’ and be polite. Be pleasantly belligerent, and keep going until you get some help.

Original poster
Worrysaboutalot · 26/04/2020 20:52

"Be pleasantly belligerent, and keep going until you get some help"

Will do. It depends a great deal on which GP rings me back. Hope I get the Ftiday one, he was very decisive.

OP posts:
FloutMyArse · 26/04/2020 21:02

I have MS. My greatest regret is letting the NHS mess me around without treatment until my neurological damage left me permanently disabled. If it’s possible at all, I would urge you so strongly to pay for a scan before it is too late for you.

Original poster
Worrysaboutalot · 27/04/2020 08:34

FloutMyArse Flowers
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I rang earlier for a telephone appointment, waiting for a ring back from the doctor and it is one who is very good. I hate making a fuss. I really hope I get some help somehow. I am scared of just waiting while my body slows down:(

OP posts:
PastMyBestBeforeDate · 27/04/2020 09:14

Good luck Worrys

Original poster
Worrysaboutalot · 27/04/2020 09:44

On the way back to hospital for an MRI scan as a day patient. Wish me luck. Hopeing for simple easy to solve problem.

OP posts:
TwoBlueFish · 27/04/2020 10:13

So glad this doctor took it seriously and got you the scan.

BillieEilish · 27/04/2020 10:38

Really great news, they're dealing with it. Good Luck. Hope it's something straightforward and quickly resolved. x

PastMyBestBeforeDate · 27/04/2020 11:16

Good news :) As you say fingers crossed for answers and solutions.