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.

The good and bad news is the neurology consultant is absolutely sure this is not a neurology problem. He said the symptoms did not match up with neuropathic pain or MS.

He is asking for an MRI brain scan and some electrical tests but because my power and reflexes tests done by A&E doctor were fine and my clear spine MRI had part of my brain on it these mean that new tests will be clear.

I asked what else it could be and he said when the tests come back clear I will go back to GP care. He said they might say it is Fibromyalgia as that is the diagnose when everything else has been exhausted.

But Fibromyalgia main symptom is pain throughout the body. I only had pain in my feet now treated with nerve painkillers. And an uncomfortable pressure around my bustline. So this doesn't seem to fit.

I am pleased that it is very unlikely to be a serious neurology issue but upset, as where does this leave me ?

I can't drive or walk or sleep well because of my permanently frozen cold feet. How long do I wait to see if it goes away on it's own.
ABOVE IS AN UPDATE FROM OTHER THREAD

I am in good spirits today. The MRI brain scan is tomorrow. Not got a date for the electrical test. I expect them to be clear but need to be sure.

When I am discharged back with GP care, I am going to ask about B12 deficiency. Another poster suggested this approach and despite my last two blood tests coming back clear, I think it fits my symptoms and is worth a try.

Just back from brain MRI scan. I was so still they thought I fell asleep. I said no, I am just not keen on small spaces, so was staying as still as possible to avoid messing up the scan.

The consultant already saw part of my brain scan on my spine scan last week. So it is 99.9% likely to come back clear. Just checking to be though.

Now awaiting electrical tests, which I think might be the nerve impulse test the GP mentioned. But I haven't got a date for them yet.

Great that you have finally got the brain scan.

I'm having similar symptoms, weakness and pins and needles and a permanent sense of cold in my feet. Please let us know what the dr says

hotstepper4 I would talk to your own doctor, see what they say about your symptoms.

In my case I have thankfully been told that my brain scan will be clear, as he saw part of it on my spine scan last week. So it was just a matter of being complete, ge ordered it.

I am more interested to see if the nerve conduct tests which is what I think he meant by saying electrical tests. As that will tell me is my leg nerves are damaged at all or if it is all in my head. Then I can move forward with that information.

@Worrysaboutalot have they considered Guillain-Barré syndrome?

I don't know tbh. But I read having power and reflexes which I do, rules that out for me.

Just an update.

I was diagnosed with an rare neurological condition called Dorsal Root Ganglionopathy, which is a pure sensory neuropathy.

No cure but the condition can be halted by use of steroids and immune supressed medication and that is what I will be on for life.

Yes, it sucks to know my legs will never walk properly again but I have my wonderful family supporting me and a great power chair to get me around.

Life is good

You sound so calm in your posts and so patient. I hope things can improve now you have a diagnosis.

Ah OP I'm sorry to hear that it's incurable but so glad that you have an answer at last. You have a brilliant attitude to all this.

@CottonSock

You sound so calm in your posts and so patient. I hope things can improve now you have a diagnosis.

Cottonsock Thank you. The consultant thinks the steroids have stopped me getting worse. Especially as the tips of my fingers and the top section of my right thumb are numb.

It could of got so much worse. I still have use of my arms and that means I might drive again one day.

@SionnachRua

Ah OP I'm sorry to hear that it's incurable but so glad that you have an answer at last. You have a brilliant attitude to all this.

SionnachRua Thank you. I don't have any choice but to get on with things in the best way I can. My DH is so supportive, that really helps I would be lost without him.

Worrysaboutalot, can I asked how long have you been waiting for a diagnosis.

@Biglumpycustard

Worrysaboutalot, can I asked how long have you been waiting for a diagnosis.

Short answer Either 4 months or three years.

Long Answer
I really started to fall apart mobility wise mid March 2020, as I had to ask the school for help to get my kids to school, as I simply couldn't walk that far, it was too hard and I fell too often.

Covid lockdown worked in my favor as I went via GP direct to A&E and APC to quickly get tests and MRI scans I would of waited months for at any other time.

Once I was fast tracked to Salford neurology, again I was tested fast for more scans and a nerve conduct test (which showed all my permanently nerve damage) Because all standard clinics and testing had been cancelled due to Covid, I was fast tracked there too.

Offically diagnosed in July 2020.

However my neurologist says looking at my medical history and the damage I have, said this has been coming on at least 2 years and maybe longer. Which sounds right to me, I have been falling and dropping things for at least 2 years more like 3 years.

I have been to my GP about this before and an early neurologist appointment to a local hospital. Where the neurologist looked in my eyes and tested my reflexs anx told me to wear walking boots and be more careful so I didn't fall over or drop things....idiot.