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?

Pleased to hear and good luck. Knowing is better than not knowing and treated is better than ignored.

Just back home.

No results yet. Consultant said someone would ring me later today or tomorrow with the results.

Consultant said that my symptoms were uncommon and he didn't think there would be a treatment.

He thinks the MRI scan will come back clear but it was worth checking to be on the safe side and to reassure me there is nothing to worry about.

He also asked if I was coping at home with the accidents and I said yes I was used to the poo ones from BAM. I prefer to be home.

So awaiting the results.

If they are clear, I either bother the GP again or try and wait this out.

If they are not clear, well I am not ready to think about that option.

Thanks for all the support on the thread I will update when I have something to update you with.

Where did they scan?

The full spine

That is good am glad to hear it. Good luck for the results. I know what it’s like -you don’t want them to find anything but actually if they found something little and curable it would be a relief...

Consultant said that my symptoms were uncommon and he didn't think there would be a treatment.

Oh my word, how encouraging

Please don’t minimise the incontinence though, what you’re going through is dreadful. Hope you get some encouraging news soon.

Hope all is well OP. Just wanted to pop up and say that I have these symptoms - I have ehlers-danlos, a connective tissue disorder, and dysautonomia in the form of POTS. My gastric and bowel symptoms for part of my dysautonomia and gastroparesis as a result of my condition.

May not be useful but thought it was worth saying so. Both took a decade for diagnosis and treatment is an uphill struggle.

I’m so glad you’ve had a scan. While MS or Transverse Myelitis can be a disaster if left untreated, modern medicine can minimise disability. Even though I’ll never be the same, my eventual treatment has improved my condition immensely and halted a terrifying downward spiral. But my gp and I had to be very insistent, even when I was experiencing worsening relapses each month. Now, with treatment, I’m maintaining my capacity. Early diagnosis is critical, and I am glad you are getting the information you need to determine what conditions bear further investigation. Best wishes X

Used to work on a neuro ward - experience was that most folk who came in with eg numbness, incontinence etc as inpatient didn’t have MS, GBS, cauda equina etc . A lot were diagnosed with functional neurology instead - and there are plenty of other disorders that can cause similar symptoms too ... but they absolutely have to rule the most serious out first . Good that you’ve had an MRI now . Hopefully the results are with you soon !

I didn't mean to alarm you, OP. I was diagnosed 21 years ago and was just trying to say there is no set pattern of symptoms and it's different in everyone.
You would never know I had it unless I chose to tell you and I've never been prescribed any drugs. My disease is described as behaving benignly now.
Even if it did turn out to be MS it honestly doesn't necessarily signal the end of the world. Good luck and best wishes

Good news My spine scan came back completely clear. No imflamation of the spine, no tumours etc. Very pleased and very grateful to hear it. It could of been so much worse.

Less good news I rang my GP to see what they could do for my symptoms now.
Nothing, I need to wait at least six months for neurology to look at my medical record and see me. Six months !

So I have to get my head around being double incontinent, struggling to walk or stand and unable to drive for the next six months.

I will get there, but today I feel very down and upset. I am trying to find something positive to cling on to at the moment and I can't find anything.

I will probably be in a better mind set in a day or so but today everything looks so bleak.

Who looked at the scan? Was it a neurologist? If not I would try to make a private appointment to see one.

It was a very nice Acute Medicine Consultant. (I just googled his title off the hospital page). He works in the Ambulatory Patient Care Unit which the GP referred me directly to.

I don't have the money for a private neurology appointment.

I too have had GBS in the past but it took weeks of trying to get past the GP as I had only numbness in feet and hands not motor problems - and then horrendous pain. I kept being fobbed with being told it must be stress. I was quite stressed being 28 years old and not being able to feel my hands and feet, walk or go to work.
I too was told to that it would be 6 months before seeing a neurologist on the NHS. However after sobbing down the phone my mum paid for me to see a private neurologist who then took things much more seriously. I had to pay privately for MRIs and then was fast tracked to hospital but via NHS route.
This may be an option for you OP. The stress of not knowing what is wrong is horrendous and very scary.

I hope you sorted in the end.

No, that isn't an option for me. I am a SAHM who was looking to return to work as CV took off. I have no savings, nothing to throw at this. I will have too wait the six months.

My own parents are shielding, I haven't told them of what has happened to me over the last few weeks. I rung them up and tell them cute stories about the children and be as upbeat as I can. They don't need more to worry about.

I'd say you need an MRI of the brain aswell as the spine, op

I agree. This doesn’t happen out of nowhere. They didn’t find it in the spine so now they need to look elsewhere. Back to your lovely GP. Sending you unmumsnetty socially distant hugs.

Is that something the neurologist might suggest? Another mri scan ?

The GP has been very firm that now they have ruled out the nasties from the spindle MRI, there is no further treatment they can offer.

She did kindly say I could ring back if I got worse. I cried. I said I couldn't see how things could get worse.

I’m glad you had your MRI. Those who keep mentioning private care, I’m not sure that’s helpful right now. Due to covid, private hospitals aren’t really accepting routine treatments either. Unfortunately looks like there is a wait.

On a positive note I am asking for help with how to cope until September, by posting on the health section. I have to keep going to September.
www.mumsnet.com/Talk/general_health/3893344-Difficulty-walking-and-double-incontinent-need-advice

I’m glad you had your MRI. Those who keep mentioning private care, I’m not sure that’s helpful right now. Due to covid, private hospitals aren’t really accepting routine treatments either. Unfortunately looks like there is a wait.

I think that will change in the near future though. OP just needs a consultation rather than private treatment.

It was a very nice Acute Medicine Consultant. (I just googled his title off the hospital page). He works in the Ambulatory Patient Care Unit which the GP referred me directly to.

They will be looking for things that need immediate treatment. I'm not so sure that they would be able to diagnose something like MS. There obviously is something wrong. That's why I would try get a private appointment. You have had the MRI which is the major expense so would probably only have to pay around £200 for a consultation.

Just wanted to say I'm sorry for all you're going through right now OP, it's not an easy path at all.

My DH has had health problems (different, more slowly developing, and milder than your own). He was first referred to a neurologist 2 years ago and it has been an emotional rollercoaster. The waits are obscenely long for initial appointments, and unfortunately after that too. For us, at each visit they decide to do a new test, he waits 2 months for an appointment, 2 months for the results, 2 months for another appointment with the neurologist...you get the picture. It is gruelling.

Sometimes the NHS is great at acute emergency care, but a bit less good at puzzling cases, especially where they think there may be no treatment (those same words were said rather flippantly to my DH. They were not helpful, or kind, so I'm sorry they were said to you too). It shouldn't be this way.

I'm so sorry not to be able to offer any useful or practical advice. Just know that you're not alone. Six months of facing double incontinence and not being able to drive does matter, you and your family matter. I'm sorry

Your GP should automatically be requesting an urgent neurology referral op. You cannot wait for months in this state.