Difficulty walking and double incontinent need advice

[Worrysaboutalot]

For the last few weeks, I am numb from my bust line to my feet and struggle to walk as my hip/leg joint just won't cooperate.

I am also double incontinent. I can not feel my bladder or bowel. So I have no idea if they are full or empty. No urgency at all. I go to the toilet by the clock when I think I might need it and when I sit on the toilet, I can empty wee or poo in the toilet.

If I don't time it right I either leak wee or feel poo start to leave my body and then I hobble to the loo.

Luckily all the horrible possibilities for why this is happening to me has been ruled out. Thanks to GP and hospital, blood tests, bowel scans and spine MRI. So now I have a six month wait to see a neurologist and my GP has sympathetically explained there is no more treatment they can offer me at this time.

So looking for sturdy sticks recommendations to help me move around.

Ideas in how to best manage my bladder and bowel issues.

Ideas on what to do about my disordered eating. I love my food, very overweight and was on a diet before this started (2 stone down, 3 more to go) So I have months before this will be a problem. However because I can't feel my stomach. I have no idea if I am hungry or full, now I have no desire to eat at all. I manage one meal a day which my DH cooks. I both don't want to eat plus worry I will over eat and hurt my stomach. So my meal is half a sausage or 5 mouthfuls of salads in a wrap. At the moment I have plenty of fat to live off, but a few months down the line I won't...any suggestions.

Maybe a hopeful story of how this happened to you and how you are fine now ? Bit of a long shot but here's hopeing.

I know almost nothing on this subject, only that my friend was diagnosed with ms about 12 months ago. Her symptoms were body numbness. She first had a brain scan to look for lesions and when that showed nothing she was given a body scan and lesions were found on the spine. We’re in Australia so may do things differently?

Hoping you don’t have ms but thought it might be worth discussing with your doctor.

Onebrokentoe Did she not feel her bladder, bowel and stomach like me ?
Like you have no idea if you are full of wee or empty or need to poo or eat. Could you ask her for me ?

How much of her body was numb ? Did it get worse than me (bust to feet) ? Did it go away ?

That said my spine is clear, so maybe that rules out your friends condition. Just got excited as it seemed to match me.

Not being able to ‘feel’ your stomach sounds like it may be anxiety related to me but not surprising with what you’re going through! You must be very stressed and angry at the GP/medics for allowing you to just be left. I’m shocked for you.

The double incontinence is a big concern. Did they not refer you for either training in self catheterising or placing a catheter? This is a neurological emergency, surely?! I’m concerned you’re buying equipment that should be provided to you by the NHS and you need to be properly assessed to make sure you’re using crutches/sticks correctly.

I would strongly suggest you see another GP today for a second opinion. They can refer you to the medical team in hospital so you don’t need to wait in A&E for hours on end.

Please do seek urgent medical advice again. What’s happening to you isn’t right.

Have you been tested specifically for Cauda Equina Syndrome?
This is often undiagnosed as needs an expert involved.
Good luck

@Worrysaboutalot she said it began in one foot and moved up her leg to her genitals but didn’t affect continence. I also noted the similarities and wondered about the possibility of a brain scan, which is why I wanted to mention it to you.

Yes I was checked for Cauda Equina Syndrome. The orthopedic consultant said so had no red flags for this syndrome and referred me back to my GP.

I am having accidents not retention of wee/poo. If I go to thd toilet every 2 hours most goes in the toilet. I have wee leaks but small enough a thick pad holds it. Poo is more of a problem. I had to shower and change after a accident. But making notes on my habits I usually go every other day around 1pm. So I hang out in my bedroom from noon until the poo turns up before I risk going downstairs.

I have spoke to 8 or more gp's and several consultants, I have had plenty if people look at me, none of them are worried. So I have to accept that while this isn't ideal I have to wait it out. Maybe it will go in a few days and all this worrying will be for nowt (I hope)

Just been doing some hunting the programme I mentioned is series 5 episode 6 of Hospital shown on BBC 2. It looked at neurologist in the Walton Hospital with a special clinic dedicated to functional neurological disorder. There is also a website that is very informative “neurosymptoms.org”

I have a multi vitamin supplement every day, which should help.

It really won't. I'm sorry OP, I don't want to knock you when you're already down, but you are at serious risk of malnutrition at the moment and you need to talk to a dietician. Your lack of energy could well be down to malnutrition already as if any of us don't eat properly we will feel weak and lacking in energy.

If you want to look at something online, this gives some basic info: www.nhs.uk/live-well/eat-well/, but really, given your complex medical situation, you should speak to someone who is an expert. I'm sure you could consult virtually, but you aren't eating enough at the moment to keep body and soul together.

So sorry you’re going through this op.

One further thought regarding the eating is if you’ve not got enough fibre and liquids going in you’ll become incredibly constipated which will open up a whole host of issues that you may not feel straight away.

Please ask for urgent help with a dietician as well 🌺🌺

My husband is telling me to eat more. I will try. I have a bowel issue which runs more to loose poo, so I cut down on those pills while I am sorting out the food.

I had a whole burger for my tea, so I am getting better, food wise.

I am on Fitness Pal and I know what I should eat. I will try a salad for tea tomorrow.

My goodness OP, how difficult for you.

On the eating, you said you love your food. Are you now not enjoying the taste of food? As if so, that’s a separate symptom and should be mentioned.

If you still enjoy the taste of food then I would focus on eating your favourite foods, ideally the healthier ones of course :) You may not be able to feel full after eating but perhaps you would get the feeling of satisfaction from the nice taste and that would be encouragement to eat.

Regarding poo, many of us will find our bowels get into a regular routine, sounds like you have found this already and I would suggest keep the routine going. A coffee or sometimes even a large cup of tea and bit of chocolate can be enough to stimulate a poo - so if you want to cut down the time spent waiting in your bedroom then maybe retire there at 12 as you are doing but with a cup of caffeine to help things along.

Oh so sorry to hear this OP. I truly hope you get a diagnosis soon. You must be very scared.

I’m sorry you are so unwell.
First thought was Guililan -Barre syndrome. But I’m no Doctor.
Hope you get some help ASAP

Has MS been ruled out? I've seen symptoms similar to this before and MS was the cause. Hoping it's something easily diagnosed and easily curable.

I can’t think of anything as unhelpful as anyone (medics or bystanders) suggesting a functional (ie psychosomatic) cause before all other possibilities have been properly ruled out.

How awful OP. I can’t believe you’ve just been left to get in with it on your own. Your symptoms sound severe, extreme and very limiting to your quality of life.

You’re not hyper mobile at all are you? I was wondering about Ehlers Danlos. Someone I know had it and they had similar problems with double incontinence and not having the sensation of needing to go.

No, I am not not hyper mobile.

I can still taste food

My husband ordered me a lovely sweet shredded chicken and plain rice a couple of days ago.

I managed a few spoonfuls of rice and a few pieces of the shredded chicken. I enjoyed eating it but couldn't make myself eat a lot. Don't know why. But without feedback of having a hungry tummy calming down and going to a contented full tummy. A lot of my food enjoyment has gone.

It didn't go to waste DH had it for his tea today.

ArriettyJones

I would be very pleased if it was psychosomatic. That would mean it will permanently go away at some point and that there isn't anything wrong with me.

I am guessing while they are sending me to neurology, the doctors feel they need to rule out a few things first.

That’s the thing. You need to rule out physical causes first. Six months seems a very long wait to see a neurologist with such severe symptoms, but I’m not actually surprised, given conditions in the NHS.

Is there any possibility of seeing a consultant privately? Preferably one that also has an NHS clinic in a local hospital?

Sorry, that wasn’t clear. What I meant was they can’t diagnose functional illness until every possible physical cause has been ruled out. So looking into the possibility of psychosomatic causes while still waiting for a neuro appointment is a medical nonsense.

Good luck. Spinal issues are miserable

I don't have the money to go private and ithed posters suggested/knew that private appointments aren't going ahead at the moment anyway.

I will wait. I will learn to be patient.

Okay, but compare your symptoms very carefully to authoritative descriptions of Cauda Equina syndrome (NHS, Bupa or Mayo Clinic websites for example) one more time, and if you think there is ANY possibility that could be the issue, complain calmly to the hospital - in writing - and be very assertive about it.

Take care.

Luckily the hospital consultant ruled out Cauda Equina syndrome last week, I have no red flags for that one. I understand it is very serious and a true emergency.