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AIBU?

Share your dilemmas and get honest opinions from other Mumsnetters.

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.
‐----‐

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:
Original poster
Worrysaboutalot · 26/04/2020 12:55

Hand grip

OP posts:
PastMyBestBeforeDate · 26/04/2020 13:00

A quick Google seems to show some information about TM and thyroid levels in as much as it may affect the frequency and duration of TM. Although Dr Google...

PastMyBestBeforeDate · 26/04/2020 13:02

Can your GP contact the MS team at your hospital? They might have advice which would be quicker than waiting for a neurologist. They probably won't talk to you because you don't have an MS diagnosis.

Original poster
Worrysaboutalot · 26/04/2020 13:07

I am happy to mention transverse myelitis to the doctor as the symptoms fit.

But if everyone has different symptoms for MS, I don't understand how I can ask my doctor about that iyswim.

I will ask about scan options as irrelevant as to my problem is, every suggestion has to be confirmed or ruled out by a MRI scan.

OP posts:
Original poster
Worrysaboutalot · 26/04/2020 13:08

My thyroid levels have been checked and are fine. So that is one thing off the list.

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Original poster
Worrysaboutalot · 26/04/2020 13:10

Any how, good news I was surprised by a wee and a slow poo when I did my hourly toilet check. So I feel able to go downstairs and see my kids and DH, I am very lonely upstairs. But didn't want to be too far from the toilet until I had a poo.

OP posts:
Bigfatspiders · 26/04/2020 13:29

When you say you’re not retaining urine did they check OP? You said you leak if your bladder is too full? It doesn’t sound like you’re emptying properly tbh. With several episodes of neurological symptoms over the last while I would be very suspicious that you could have MS. You definitely need an MRI scan. Here an MRI brain is about £300 and spine is about £500 but it’s different everywhere. Could your GP ring the local neurology doctor on call for advice about how to get sorted?

nothingcanhurtmewithmyeyesshut · 26/04/2020 13:34

How is ascending numbness not an emergency? What happens when it reaches your lungs? Will you be able to breathe? What about if it carries on, will you be able to speak?

I'd be tempted to park myself in A&E and make a very loud nuisance of myself until they did that scan. Those symptoms must be terrifying and they dont know if they are reversible. Surely it should be a priority to stop them.

Bigfatspiders · 26/04/2020 13:41

What area are you in OP? I would probably agree with above. But wait until tomorrow when normal levels of staff are in and go to an hospital/ A&E that you know has resident neurology.

Original poster
Worrysaboutalot · 26/04/2020 13:43

Bigfatspiders
In hospital they did two bowel ultrasounds scans one with a full bladder and one after a wee and they confirmed I am voiding (weeing I assume) enough. So that is not an issue.

OP posts:
Original poster
Worrysaboutalot · 26/04/2020 13:48

I am waiting to speak to my GP first and see what he/she decides.

Yes, it is terrifying and I hope I continue breathing and talking as normal. However going back to A&E would be futile, they told me when I was discharged, the symptoms which would mean further action and I don't have those.

The nearest resident neurology centre is in Salford, a 30 minute drive away from ours. My husband is a key worker and needs to work at home, while I home school our four children. I am unable to drive with my legs like this atm, well I might manage but I am not willing to risk my life or other peoples trying ! So unless I have an arranged appointment via my GP, I can not go there.

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Original poster
Worrysaboutalot · 26/04/2020 13:51

Just to be clear if the GP arranges an appointment or scan then my DH will take leave to get me there. It is that I would not expect or ask him to sit outside Salford hospital with 4 kids in the car all day on the off chance that someone will see me.

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WorkingItOutAsIGo · 26/04/2020 15:53

You do need to be seen by a neurologist and am shocked you would face a six month wait with these symptoms. I think you will need steroids and whenever I had them I was admitted to hospital for three days for IV steroids. Obviously now is not the ideal time for that.

Original poster
Worrysaboutalot · 26/04/2020 16:05

It is normally a 4 - 6 month wait for a neurology referral to be processed but the GP can speed it up if necessary but I choose the worse possible time to fall to pieces. Stupid me. Blush

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mrpumblechook · 26/04/2020 18:05

Given your symptoms a year ago as well as the symptoms you have at the moment, you could have MS I'm afraid. That isn't as bad as it sounds as there are good treatments nowadays which can very much reduce the number and severity of relapses. It does take a few months to see a neurologist.
You say you are having problems walking. Is that because your muscles are feeling weak or is it because you can't feel where your feet are?

mrpumblechook · 26/04/2020 18:12

How is ascending numbness not an emergency? What happens when it reaches your lungs? Will you be able to breathe? What about if it carries on, will you be able to speak?

If it is just numbness they don't treat it as an emergency in my experience.

Original poster
Worrysaboutalot · 26/04/2020 18:16

I am struggling to walk because I feel like I am wearing very tight leggings and my hips legs joint isn't cooperating with me.

Like I am trying to wade though waist high mud. The knees and ankles seem to be ok at the moment it is all in the shorts area.

The neurologist was very clear that nothing was wrong with me last time except thyroid levels, I don't think that will change bring referred back. But for completeness I will mention it when I get an appointment when ever that might be.

OP posts:
mrpumblechook · 26/04/2020 18:21

The neurologist was very clear that nothing was wrong with me last time except thyroid levels, I don't think that will change bring referred back. But for completeness I will mention it when I get an appointment when ever that might be.

Did they do an MRI though?

Original poster
Worrysaboutalot · 26/04/2020 18:25

Last neurology appointment was about 10 minutes. He check the power and reflexes of my arms and legs, looked in my eyes with a light and said I was perfectly fine.

He talked though my medical history for 5 minutes and when I mentioned the recent UA Thyroid, he said that thyroid levels would explain everything and I gratefully went home and waited to get better and over time I did.

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

Forgot to answer the question. No MRI scan.

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Roselilly36 · 26/04/2020 18:31

Sounds very much like Transverse Myelitis, I had an attack of this a few years back and later went on the get a confirmed MS dx. MRI would prove if this could be the case, you need urgent referral to a Neurologist and perhaps a high dose course of steroids to bring down the inflammation. My MRI covered 3 areas, head, cervical & whole spine, cost was around £850, around 8 years ago. I was a private patient & had a dx within a week. I hope you are feeling much better soon OP.

mrpumblechook · 26/04/2020 18:36

I'm not sure I would want to take a high dose of steroids for just numbness at the moment. It won't make any difference to the end result and maybe OP will feel better in a few days anyway.

Original poster
Worrysaboutalot · 26/04/2020 18:38

Thanks Rose. I won't be holding my breath on the MRI scan the hospital were sure I wouldn't get one for numbness.

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Original poster
Worrysaboutalot · 26/04/2020 18:40

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

OP posts:
mrpumblechook · 26/04/2020 18:41

I won't be holding my breath on the MRI scan the hospital were sure I wouldn't get one for numbness.

You will get one eventually.