Anyone has experienced numbness of body and neurologyl

(767 Posts)
Worrysaboutalot Sun 26-Apr-20 10:48:00

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 sad

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?

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PastMyBestBeforeDate Sun 26-Apr-20 10:51:24

Have they considered transverse myelitis? That can come on quickly like this.

Worrysaboutalot Sun 26-Apr-20 11:00:07

PastMyBestBeforeDate, my doctor has no idea what it could be. He just said they are all senses rather than motor problems and that neurology is the way to go.

The Gd me I had to go to A&E if I developed wee problems whilst having numb legs.

The orpothedic doctors said they were only ruling out emergencies and then referring back to GP. Which is a shame as the GP said normally the hospital would of done an mri scan on my back which could of helped them diagnose me. But they are only treating absolute emergencies and Covid patients which I totally understand.

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MrsT1405 Sun 26-Apr-20 11:16:27

I had very similar symptoms and it was Guilluan Barres syndrome. I'm rather surprised they are being so slow. The paralysis is ascending and your lungs could be effected. If you have trouble breathing I'd go straight to a and e.

Worrysaboutalot Sun 26-Apr-20 11:18:21

It is not Guilluan Barres syndrome as my power is ok and my reflexes are present. I suggested that as my friends DH had that nasty illness 5 years ago.

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Worrysaboutalot Sun 26-Apr-20 11:19:05

But thank you if I had trouble breathing I would go back to A&E.

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PastMyBestBeforeDate Sun 26-Apr-20 11:20:39

I would be inclined to think TM is an emergency to be honest. It's not cauda equina (sp?) which is obviously what you were checked for but it can still have the same effect.
I don't know much about the pathway for TM - I only know about it as it was the working diagnosis while I was waiting for my MS diagnosis. Once they established I had brain lesions as well as spinal ones and multiple episodes, I was diagnosed with MS.
I don't know what to suggest unless you can persuade your GP to look into it.

Worrysaboutalot Sun 26-Apr-20 11:39:52

Problem is GP wants me to have an MRI scan and the hospital won't do it. (Understandly at this time)

Frustratingly transverse myeliti is also diagnosed or ruled out by an MRI scan, which I can't get. The symptoms are very similar to mine, I will mention it to the doctor.

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Worrysaboutalot Sun 26-Apr-20 11:45:36

I wonder how much it would cost if I got my GP to refer me for a private mri scan ? Probably far too much money. Does anyone have any idea ?

I am really worried that they will leave me like this for 6 months until I get an neurology appointment. sad

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BrandoraPaithwaite Sun 26-Apr-20 12:01:05

Hi OP, sorry to hear you are going through this. Like PP my thought was myelitis. Has anyone suggested a course of steroids so far?

If it is neuro then a short course of high dose steroid like prednisone can work absolute wonders.

Worrysaboutalot Sun 26-Apr-20 12:05:24

No steroids mentioned just the pill for the nerve pain.

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WorkingItOutAsIGo Sun 26-Apr-20 12:11:04

Sounds exactly like myelitis (have had it myself). Steroids probably a good idea but otherwise it’s rest and time. A private MRI would probably be £1000+ as it’s a couple of hours long. Good luck and try not to worry too much - it will get better in time.

Worrysaboutalot Sun 26-Apr-20 12:14:06

WorkingItOutAsIGo
If it is Transverse Myelitis how long will it take to go?
Do I need steroids or will it go on it's own? Might it come back and now can I stop that from happening?

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PastMyBestBeforeDate Sun 26-Apr-20 12:30:48

DH had a private MRI for a back problem and it was about £275.
TM might go by itself over a few weeks or months. Or it might not. This is why it should be tackled quickly. I can't believe they won't do any MRIs - surely they must be doing emergencies?

Worrysaboutalot Sun 26-Apr-20 12:33:37

PastMyBestBeforeDate
Yes, only MRI scans for emergencies.

Being numb from the waist down with no bladder urgency and leaking is not an emergency.

If I develop pain and start retaining my wee, I am too go back to hospital. But clearly that is not my problems.

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Worrysaboutalot Sun 26-Apr-20 12:34:30

Did your DH have to pay for a consultation first or just for the scan ?

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dontdisturbmenow Sun 26-Apr-20 12:39:08

Hasn't MS been mentioned. It sounds like a case of MS attack but I would have thought your GP would certainly have suggested it.

Whatever it is, it sounds very frightening, so I hope you get an answer soon. 6 months to see a consultant is not acceptable, you should be considered as urgent and seen quicker.

Worrysaboutalot Sun 26-Apr-20 12:40:35

No, MS has not been mentioned (Thank goodness) I am confident it won't be that as my BIL has it and these symptoms are nothing like his.

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Bluesheep8 Sun 26-Apr-20 12:44:24

The symptoms of MS are different in everyone.

Worrysaboutalot Sun 26-Apr-20 12:45:49

Bluesheep8 Oh, are they. That is worrying.

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mrsjoyfulprizeforraffiawork Sun 26-Apr-20 12:46:31

If you live in/near London, I would suggest London Imaging Centre in Wimpole St W1 as (if they are open during covid) they operate a sort of easyjet fee system for scans and you can get a scan (of one area) for about 250 pounds (less popular times of day cheaper than prime times). Not sure quite what areas should be scanned though - possibly lumbar spine initially. Hopefully your gp has sufficient neuro experience to know.

PastMyBestBeforeDate Sun 26-Apr-20 12:47:20

DH's osteopath referred him. He also thinks you might be able to self refer. So he just paid for the scan which included a report.

PastMyBestBeforeDate Sun 26-Apr-20 12:50:24

The MS diagnosis usually needs brain lesions and more than one episode though. I had two distinct episodes just far enough apart in time to qualify as separate episodes.

Worrysaboutalot Sun 26-Apr-20 12:50:34

I am up north, so London not an option but thanks for the thought.

I will talk to my gp tomorrow and my local private hospital which does MRI scans (I googled, no prices mind)

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Worrysaboutalot Sun 26-Apr-20 12:55:05

I don't know what symptoms are classed as MS symptoms. I was referred to the neurologist a year ago as my grip and ankle kept giving way
Meaning I was falling over and dropping things a lot. Including falling down my dentists stairs !
My neurologist couldn't find anything wrong with my power or reflexes and he thought it was due to my thyroid levels as I had only recently been diagnosed with UAT and started the pills.

Could that be relevant now or not ?

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