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?

@ThickFast

How much improvement have you felt so far? Or does the improvement happen after the course is finished?

Not seen any improvement yet.

But I haven't got any worse. Except more nerve pain but I hope that my pills are losing their effectiveness.

My consultant said he expected improvement would show between 4 and 6 weeks. I am bang in the middle of that window, so I have time for improvements to show yet.

I ask today's clinic doctor, how long the steroids would continue to work from the last dose and he said 1 to 2 weeks. So I might get improvement in week 7 when I see my consultant.

I just need answers so I can sort out where I am and deal with things.

Hi Worrysaboutalot
I have read the thread filtered to your comments and want to ask if you ever tried the vitamin B12 injections?

The thing with B12 is levels can appear ok as different things can mask the deficiency or the body can have a problem converting B12 into the form that is usable for the body. I don't think a straightforward blood test can give a reliable diagnosis. Gastric problems are definately a risk factor for being deficient and the results of deficiency can be debilitating and include what you describe.

I think it is possible a B12 deficiency could cause damage e.g. to Myelin (spelling?) and that damage is then diagnosed as the cause of your problems rather than the underlying deficiency.

Can you speak to your consultant and ask if you can try B12 injections if they believe they will do no harm. If they will do no harm then they must be worth a try to rule out deficiency surely? If they won't allow it (cost) do they believe you buying your own sublingual (sp? sorry) tablets would do no harm? They may not be so effective due to your gastric/absorption problems and you would have to research the form of the vitamin as readily usable by your body rather than a form your body has to convert as this conversion may be the problem.

I'm sure you have seen similar information but this website has a comprehensive list of signs of severe deficiency
b12deficiency.info/signs-and-symptoms/

I hope you get improvement soon.

Winter2020
Thank for reading my posts. I agree anyone with my neurological symptoms should first check their B12 levels and consider B12 injections via GP or do it at home.

Indeed had I been discharged from the consultants this time. I already had researched though a nice poster on MN a way to buy B12 from a Germany Pharmacy and a sharps kit from a UK pharmacy. This was my plan, I was convinced it was B12 deficiency and I wanted it to be, as it was curable and minor.

However in my case B12 issues are completely ruled out by my nerve conduct test, which showed damage to both my leg and arm nerve cell bodies (not the myelin outer coating) which is also why my nerve damage is permanent :(

My current steroid treatment is being given to stop the progress of this damage to be nerves and I might see a small improvement if I am lucky. I am still waiting hopefully to see this improvement.

But to any future readers yes, get B12 ruled out at an earlier stage.

I've got my appointment for my MRI, Tuesday 11 August, just got to wait for Nerve conduction test appointment now.

Nat6999
Glad you are getting your neurological tests lined up.
Have you heard from the council about your housing yet ?

I wrote and accidentally deleted a post about needing a ramp in the front garden, so I can leave my house in the future.

I have a quote of £6k for the ramp from the council approved builders.

I was asking how to approach the OT but she called whilst I was posting. So we had a quick chat.

I explained that without the ramp I would never be able to leave my house. As I need a mobility aid and they will not go down stairs.

She said they didn't fund ramps unless I had a prescribed wheelchair.
I explained that our council would only prescribe an inside wheelchair if the house was big enough to use one. They stopped prescribing outside wheelchairs 2 years ago. Everyone has to self fund.

I also explained that I was job hunting as I will need a job to pay off the loan, we have to take out to self fund a mobility aid.

That at my age 46yo was too young to be housebound. It will prevent me doing anything or ever working.

I asked for her to apply for funding from the council on our behalf as we couldn't do this ourselves.

She agreed to speak to her manager. :)
But hasn't promised to apply for the funding :(

She is such a nice lady, I apologised to her for being so pushy but said I had to try.

I am dreading sitting in my house alone every day from September. I can't live like that :(

I haven't spoken to the council yet, I'm waiting until I get a diagnosis.

If you don’t get anywhere with council funding (which seems to make no logical sense) then see if there might be some charities that can help with funding. The charity commission website lists trusts that may give grants if you apply. You’ll have to do an advanced search and there will be loads of stuff that isn’t suitable and maybe nothing at all. But worth a look just in case? It also lists all charities in the UK so there’s a lot of information on there which can make it time consuming work to look for the correct info.

I've only read your posts OP as it's very long. Give had a very hard year but you're coping very well. Hoping for the best for you after the next steroid injections that you feel some improvement.
You mentioned incontinence worries; the disposable full pants definitely cover both ends. If it may be long-term though, you might prefer washable options (for cost and for style). They do some in black that looks more discreet and several types, this site looks like it has a good range and might help you feel more confident, even though hopefully very rarely needed. You could call them for advice.
www.allaboutincontinence.co.uk/incontinence-washables.

ThickFast Thank you. I will have a look and see what I can find.

MRex I think you are reading my mind. After having all my kids in cloth, I was looking at options.
This is what I was looking at for when I leave the house.
These maybe

They have a full waterproof layer and a leakproof waist and leg openings.

But the cost is a factor, so I will look at your link first too.

They look pretty nice actually, but £40 is steep, yowch. Maybe try a couple of types, you'd need a few pairs anyway. There are other options in the cheaper (£9-15) range like Amazon, Kylie Lady, PS Healthcare... You can get insert pads too, but for everyday comfort I reckon full pants would be best.

The £40 is the reason I haven't bought any yet. But if it contained my accidents long enough to get to the bathroom they would be worth it.

If I can find some cheaper ones which are full brief waterproof, I would be very happy.

Spoke to the MH Nurse on the phone today.
She listen to me outlining my current situation and said that she thought I was coping marvelously and she will text me some services that might help me. I am free to ring back to talk with her if I need to. I did say I might ring back after the consultant appointment depending on what he says.

I also paid for my blue badge it will be posted out to me, I hope to get it before my Monday hospital appointments.

No news re ramp. I assume lovely OT will speak to her boss and then speak with me again.

Only two days before my last steroid appointment. I have a thank you card and box of celebrations chocolates to give to the volunteers at meet and greet at Salford, such a lovely team.

Lovely as they are, I can't see me using them again. Either my mobility will improve and I will be walking OR my mobility won't improve, then I will have to buy a mobility aid, so I can move myself under my own steam, not be ever reliant on the kindness of strangers. However kind they are, I need some independence.

It’s all so hard. Hopefully you will improve even a bit and not need the meet and greet people again.

ThickFast
Thank you

I spin between having "logical days' and 'hide head in the sand' days.

Today is a logical one. I am looking at ways to solve my problems. Making future plans to get out with our family, one day. We might not be able to get to all the places we use to but we can find new places.

I am very gratefully to my younger self for choosing DH. He really has been a rock for me. Keeping me strong. Comforting me when I am not. Seemingly sticking around, as I falling to pieces. He still talks about our future, whatever shape that will be in. 🥰

Blue badge arrived today ! In time for tomorrows hospital appointment, the last iv steroid treatment.

Then a week until the next Consultant appointment.

I have been thinking of what we need to ask him. I expect he will do the sharp/dull poke testing and the standing balance testing again.

I expect thr consultant will tell us if he feels the steroids have made a difference, based on the tests and tell us what I will be taking/doing in the future. Another steroid course or pill steroids or something else.

Q1. I want to know the chances of me walking normally or near normally in the future, so I can make a decision on a mobility aid.

Q2. Ask about being assessed for driving by the DVLA, which is linked to the first question really.

I think that is it really all I want to know. Aka Will I get better and will I be able to drive.

Hooray for a small bit of efficiency

Maybe you also want to ask him about types of mobility change; what exactly might get better with even more drugs and what exactly might get worse over time. That could help with thinking about what you need to buy. Also how to get your name down for any medical trials, if you'd be interested in that (there often seem to be various small studies e.g. using stem cells or new drug combinations).

Yes, I will ask that. I will ask him about any drug testing however my condition is so rare that I doubt any would be going on.

Once you have a full diagnosis you can check on the DVLA website if your conditions a notifiable one. They can restrict your licence for 1, 3 or 5 years when you have to reapply. If you manage to get PIP enhanced mobility my only advice to you is to get a car under the Motability scheme, that way you can have any modifications or aids fitted free, all repairs & servicing paid for, tyres, insurance, breakdown cover, the only thing you pay is fuel.

Let’s hope this last treatment is the one that makes the difference. And maybe even if you’re not loads better, it could have stopped more of a decline

@ThickFast

Let’s hope this last treatment is the one that makes the difference. And maybe even if you’re not loads better, it could have stopped more of a decline

Yes, I have got a week to see if tomorrow's treatment works.

And Yes, I haven't got worse, that is a blessing, as I am weak in the arms, my grip fails, the tips of my fingers and the top third of my right thumb are numb and no further. This has stayed the same since the first treatment.

This is an old article, and you might have read it, but in case not I thought it might give you something to hope for regardless of next week's outcome: www.ncbi.nlm.nih.gov/pmc/articles/PMC4046583/.

Mrex Thank you for the link

Last dose done this morning. Now awaiting improvement and consultant appointment in a weeks time.

I am guessing he will retest the hand/peg test, wobbly balance test and stabby test (my names not his) and give me an idea if any improvement has been made and if further improvements can be expected.

Plus when should I be reassessed for driving ?