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.

Bumping for OP

Christ op that’s terrible! Can you see another doctor for a second opinion? Do they they think it might be psychological?

Bumping for you op

I have spoke to 6 GPs at my local surgery, 2 A&E doctors, Orthopedic Consultant, doctor and two nurses, APC unit consultant.

They all say the same thing. Clearly something isn't right, it isn't an emergency, see neurology.

Does neurology mean I am making it up ? I thought it was when nerves or the brain went wrong ?

Thanks for the bumps.

Neurology is to investigate the numbness and lack of sensation for bladder and bowel control.You sound as if there is nerve damage or impingement but a neurologist will be able to tell where.
No one thinks you are making this up.
If you know which neurologist you've been referred to then you could call the secretary to see what arrangements are in place due to lockdown.Things are moving in the NHS and many services that stopped or reduced are restarting.
Hope thing start to improve for you.

Could you see someone privately?

Presume neuro as the nerves in your torso etc are not working.

I doubt they think you are making it up.

How can that not be an emergency! I am somewhat staggered that they've said that! Your quality of life must be very severely impacted. I second the suggestion to phone your neurology consultant's secretary if you have been given a name, calmly explain exactly what the situation is and that it is new and ask if anything can be done to find an earlier appointment.

You probably need a rollator not sticks from your description - you can hire or buy online and have them delivered. Just type rollator online hire or buy into google and you'll get lots of companies.

Get well soon!

Could it be a functional disorder OP?

There was a brilliant thread about Functional Neurological disorders fairly recently. Try a search x

I am reading the posts, just struggling today.

Can't find the functional thread. No assigned neurology doctor. No money got private appointments.

I agree, I wonder if it may be functional. Worth having a read and seeing if that’s an option. It may not be right. Either way, you clearly need help.

Can you save up for a private consult or is that totally not an option? Sounds like you’d have a wait to get a private appointment anyway due to COVID stuff.

I think there's more support on your other thread, OP, if you can see it.

Doesn't sound anything like a functional neurological disorder from what the OP has given us in terms of information.

Sounds like a a thoracic spinal cord lesion, not necessarily a physical lesion, could be anything from ms, transverse myelitis, spinal stroke through to guillain Barrie syndrome..... I'd say it warrants a relatively urgent neuro opinion, despite the covid situation.

Nothing on spine MRI totally clear, thank goodness.

Can you make contact with you local community care team? They are made up of distinct nurses (who can do a continence assessment and provide you with pads etc) occupational therapist and physiotherapists (who both can complete mobility assessments to get you walking aids)

There was a very interesting program about a neurologist dealing with functional neurological disorder on the BBC fairly recently. I think it was in the hospital series it may be a available on catch up well worth a look if you can find it.

I don't know which thread people mean about functional disorder, but maybe this one?

www.mumsnet.com/Talk/child_adolescent_mental_health/3827200-Functional-neurological-disorder

Here others are also, through the site search:

www.mumsnet.com/info/search?q=functional+disorder

Can't give any advice on that side but I hope you get somewhere with this. Having had a parent die from falling over, I'd say keep on trying to get faster medical assistance.

As for the eating - calorie count. Get MyFitnessPal (free, ignore their paid "Pro" upsell) on your phone, and weigh+count everything that goes into you. It'll mean you can add more or eat less appropriately.

I hope you will get the help you need soon.

On the subject of sticks, flexi-foot are the best. They have, as the name hints, flexible ferrules which are always flat to the ground even when going up or downhill, and they prevent slipping. If you do use sticks, please remember that you need to be sure the stick is firmly on stable non-slippy ground before you put your weight on it, or you can come a cropper.

Thank you got all the recommendations including community team, that walking stick which is in my Amazon basket atm, My fitness pal etc.

The issue with my eating is that it is hard to motivate yourself to eat, when you are not hungry and don't get full when you do eat. It makes it all feel a bit pointless. Plus I worry I could eat too much at one sitting and be over full, which makes me cautious when I do eat.

So I tend to eat something around 6pm but probably 50% of what I should eat. But as I said, I have the fat to live on. So it won't be a proper problem for months.

OP it's not about 'having the fat to live off', you can still become malnourished while overweight if you aren't eating a balanced diet. I understand your wish to continue to lose weight, but you should speak to a dietician as a matter of urgency about what and how much you should be eating each day as you are going to starve on half a sausage for a few bits of wrap with salad.

With the double incontinence it doesn't sound like functional neurological disorder to me. I hope you make progress on this soon OP, best wishes.

I have a multi vitamin supplement every day, which should help. I don't wish to diet at the moment. I was on a diet two weeks ago but these symptoms have thrown that out of my mind. I haven't got the energy to diet at the moment. I am just trying to get bigger amounts of better food into my system. I know logically I need to eat more but I end up playing with the food and eating only small amount of it.

Believe me I have never struggled with food on this direction before. I usually eat more when upset or anxious but my body just isn't working right atm and I don't want to break it completely.

I don't understand why eating food is currently so hard for me, is it anxiety related?

suggestionsplease1 Thanks for your best wishes. :)

This sound a terrible op, I hope you get some answers soon.

I see you mentioned a scan of your spine, did you also have a brain scan to check for lesions?

No, spine only scan.