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Original poster

Difficulty walking and double incontinent need advice

89 replies

Worrysaboutalot · 28/04/2020 10:45

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. Sad

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.

OP posts:
digerd · 30/04/2020 17:14

Was CES ruled out under an MRI with contrast?

Original poster
Worrysaboutalot · 30/04/2020 19:13

"Was CES ruled out under an MRI with contrast?"

I had no red flags for CES, no back pain, no wee retainion.

A few days later I had a spine MRI (I assume no contrast, would they inject me with something for that?) Which was clear for problems.

OP posts:
Icanflyhigh · 30/04/2020 19:29

Your symptoms are almost identical to what I experienced after spinal surgery and I developed corda equina due to a bit of spinal compression - but that was picked up on an MRI fairly quickly.

I know you've seen lots of specialists already but I would be wanting further exploration as there is certainly something wrong x

Original poster
Worrysaboutalot · 30/04/2020 20:19

Yes, I am waiting for a neurology appointment which hopefully will help.

OP posts:
Original poster
Worrysaboutalot · 01/05/2020 11:50

I have had a phone call from Salford, I have an early neurology appointment in May just 2.5 weeks away !

OP posts:
LadyDoc1 · 01/05/2020 18:39

Glad to read that you have an appointment coming up soon, sounds like a really distressing time for you. Hope you get better soon.

Original poster
Worrysaboutalot · 01/05/2020 20:41

Thanks

OP posts:
poolsofsunshine · 01/05/2020 20:55

Worrysaboutalot I'm glad you've got an appointment somewhat sooner - I'm still astounded that you were being told that becoming and remaining doubly incontinent and unable to walk for no obvious reason suddenly is anything other than an emergency!

Original poster
Worrysaboutalot · 01/05/2020 22:07

It isn't as bad as it sounds. I can walk thank goodness, just slowly and I have to be super careful on the stairs.

The toilet stuff isn't pleasant but by using timing and a watch alarm to remind me to go to the bathroom, that helps a lot.

My feet will stop hurting in a day or two once the Amitriptyline kicks in again.

Honestly things could be a lot worse. Today is a good day, I am coping well, even managed a shower without falling.

Getting tricky washing my hair as my balance is much worse when I close my eyes, so I have to be standing firmly to start with. I feel so much better.

Plus my feet are frozen block even with bed socks and under the duvet. It was keeping me up partially (plus the nerve pain) last night. But DH warmed me up a wheat bag and it is defrosting my toes wonderfully.

Off to relax for a bit and then sleep zzzzz

OP posts:
incognitomum · 01/05/2020 22:12

Sleep well pet. You sound positive which is good.

Orchidflower1 · 01/05/2020 22:35

Sleep well @Worrysaboutalot I’m in awe of your positivity.

Original poster
Worrysaboutalot · 02/05/2020 09:43

I have intermittent positivity. When I last spoke to my GP, I cried at her. Poor woman I hope she had better phone calls after me !

But when I see how badly some people have it, life limited conditions in awful pain everywhere, literally unable to walk. I am thankful.

Today I am aiming to shuffle around the garden and sit in my garden seat. If it is not raining I might sit and read for a bit.

I am aiming to finish my small embroidery I started last night. Sewing distracts me from worrying.

OP posts:
incognitomum · 02/05/2020 11:14

It's amazing you have that outlook. I truly hope this goes and it's nothing to worry about.

YinMnBlue · 02/05/2020 11:23

Op, so sorry you are living with this at the moment.

Have you shared your difficulties with eating with your GP?

It sounds as if it would be good to get some diet and nutrition advice from a nutritionist to help you eat healthily under these circumstances.

Is the multi-vitamin prescribed or advised by your Dr, or one you have picked off the shelf?

Fingers crossed for your appointment.

ArriettyJones · 02/05/2020 11:33

But when I see how badly some people have it, life limited conditions in awful pain everywhere, literally unable to walk. I am thankful.

The point is, you could be on the way to being exactly that badly affected, if what you have is not diagnosed and treated quickly.

I won’t go into specific detail here, because it’s not my story to tell, bug a family member started with symptoms like yours, got slow tracked by the NHS and now uses a wheelchair and a lot of serious pain relief. Please be assertive in advocating for yourself. Spine’s are not things to be stoically patient about.

I have a touch of spondylitis myself and, although less serious, it’s a long term nuisance.

Original poster
Worrysaboutalot · 02/05/2020 19:56

ArriettyJones Whatever is wrong with me, it didn't show on an spine MRI. I know that doesn't mean loads but I am hopeful that my spine is ok.

OP posts:
Original poster
Worrysaboutalot · 02/05/2020 19:58

Is the multi-vitamin prescribed or advised by your Dr, or one you have picked off the shelf?
Kinda both. The GP told me I had to take a daily vitamin which contained extra something. (Can't remember what) but told me to buy them over the counter, which I did.

OP posts:
Original poster
Worrysaboutalot · 03/05/2020 10:11

The suction grab bar and new bsthmat arrived today. Hopegulkh this means I can shower safely. Mh DH was unimpressed with the suction bar and wanted to put a permanent one up for me. But I don't want any permanent things up, I want to get better one day very soon and not to need this grab bar.

We agreed to disagree, lol. So I am going to try the suction bar for the time being and DH said it could be moved around to find the right spot for me, in case I need a drilled one later.

OP posts:
incognitomum · 03/05/2020 17:16

Hope it helps and is safe. I can understand you hoping you won't need one forever.

Original poster
Worrysaboutalot · 03/05/2020 20:17

Yes, I will double check it before using.

OP posts:
BlackeyedSusan · 03/05/2020 21:34

omfg....

you are doing so well, but the lack of trying to get you support/diagnosos/cure is astounding. Should not be surprised though as dd was passing out several times a day and they did sod all about that as well apart from telling us to keep her safe.

Wildernesstips · 03/05/2020 21:48

No medical background, but nutritionally, if you are not eating well you may be better off with something like fortisips than just winging it with a bit of food and vitamins.

Hope they find an answer for you soon,

ArriettyJones · 03/05/2020 22:15

Copper, zinc and B12 are very important for neuro function.

Original poster
Worrysaboutalot · 04/05/2020 12:28

Yes, my blood tests have checked all mh vitamins etc and they are all fine. I just take a multi vitamin, just to be on the same side.

I am eating a little better now, thank goodness. Thank you for the recommendation for fortisips, I will think about those if I need them.

OP posts:
Orchidflower1 · 19/05/2020 06:30

How are you getting on @Worrysaboutalot? Have you had any appointments yet?

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