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?

The only people who have the final say if you can or can't drive are the DVLA, everyone else can advise you to not drive but can't stop you. DVLA can ask for you to be assessed at a driver assessment centre.

DVLA has renewed my licence twice. Both times, I have completed their paperwork, second time they contacted my neurologist for their opinion. Niether time have I had an assessment. However when I was told my diagnosis (MS) I was told I had to contact DVLA immediately as it is a notifiable illness (also told to inform my insurance companies). If you werent told on the spot, you could wait for your appointment and ask your specialist as they are in the best position to inform you,

Hope you see improvement now you have finished the steroids and continue to improve.

Great to have had the last dose. Do you have any idea of what the options might be depending on your tests next week? Or are you trying to wait and see?

Consultant told me not to drive, that I didn't have to tell DVLA, but he would arrange/send me to be assessed to see if I could drive in the future.

I would guess such a rare condition/illness wouldn't be in the offical list notification.

But common sense dictates I am not currently safe to drive. So until my consultant and the DVLA tell me I am safe, I wouldn't even try !

@ThickFast

Great to have had the last dose. Do you have any idea of what the options might be depending on your tests next week? Or are you trying to wait and see?

I need to wait and see.

But despite that I will spend the week trying to guess the consultant next move, lol.

The letter I got from the last consultant appointment said he planned to put me on steroids pills rather than iv in the hospitals and I would be on them indefinitely.

However if the iv steroids haven't worked would they still do it.

However I haven't got worse and that was his main aim for me. That might be enough to be a treatment success.

I might have a more subtle improvement that I might not have noticed.

I wonder if they might consider ivig as an option, if they find out what immune problem is cause this.

They might have results from the blood test to add some light to the proceedings.

I just don't know and it is worrying me.

What if how I am now is my new normal.

What if I can never drive again.

What if this gets worse.

They don't have question marks, as I am frightened to ask them.

But I will, I will woman up and ask them. As the results of these questions will still be true, whether I ask them or not

I need to ask and process the answers, whatever they are. Knowledge is power.

My car hasn't moved except when it went to the dealership to be serviced since March. The last time I drove I didn't feel very confident, I couldn't feel the clutch properly when changing gear, was a bit jumpy so I haven't driven since. Pisses me off a bit having an almost brand new car sat outside that i can't just jump in & go out. I may have to think about getting something lower down because I struggle to get in it being an SUV & having an automatic.

Nat6999
That is a shame but we doing the right thing, not driving keeps ourselves, our families and other road users safe.

Just being nosey, I was wondering which conditions you have to get your mobility car ? Ignore me if you want. I hope you get the right car for your future needs.

I look solefully at my new to me 10 year old manual 7 seater, I only got it a month before my legs went numb. I miss driving her.

I've already got Fibromyalgia & ME/CFS, Arthritis, PTSD, depression & I'm autistic, I was born with dislocated hips as well. I've had mobility in both DLA & PIP for over 12 years now. Adding MS in the list doesn't make much difference if that is the diagnosis I get.

Nat6999 Good grief lady, you have a lot on your plate. Would you not be able to swap your mobility car for one that better suits your needs, after all it is irrelevant what new diagnose you get, more than the additional needs which precede it iyswim

I was repeatedly told that steroids wont fix any issue but they do hasten any healing. Whether this is the same as your case I dont know. Maybe something to also check with them?

@Pericombobulations

I was repeatedly told that steroids wont fix any issue but they do hasten any healing. Whether this is the same as your case I dont know. Maybe something to also check with them?

I will check about the healing bit.

I do remember that the consultant said the steroids would stop further damage to my peripheral nerves by closing down my immune system and making me immunsupressed.

He also said that I might see a small improvement of 10 to 20% but the main aim was stopping future damage.

No idea when or where the improvement might be seen. As he said the nerve damage done to date was permanently, maybe I am crazy to expect any improvement in my legs. Maybe he felt I might start to feel my bladder/bowel/stomach again ?

I miss feeling the warmth of the day. I wonder if I will ever feel the heat of a sunny day again ?

I was feeling very tired yesterday (due to low sleep Thursday post steroids) So I was lying down in bed wrapped in my duvet with full set of clothes and thick socks on, apparently it was a heatwave that day I read on my phone. I had no idea.

Clearly my mobility issues cause me the biggest problems out and about. But at home where I don't wear shoes and just shuffle around the place and with timed toilet visits it doesn't seem that bad.

It is so strange not knowing what the weather is like. I thought this morning was coolish because it is over cast but apparently it is warm already.

It is not a big deal on many ways but it is strange and makes me feel detached from the world which everyone else lives in.

I had a down day yesterday and was browsing the web. I accidentally bought two dresses of a vintage style and a petticoat in the sale. No idea why it isn't the type of things I wear normally but so much of what I use to enjoy has been taken from me and I thought why not, plus they were all in a sale. Something to cheer me up.

That’s a thing I have always taken for granted. Being able to feel the sun. I’m so sorry you have to experience that loss.

@ThickFast

That’s a thing I have always taken for granted. Being able to feel the sun. I’m so sorry you have to experience that loss.

I always took it for granted too. I often moaned about hot days and the heat.

Now I can't feel it, I miss it.

I wonder if I will feel the cold of winter !

I guess you’ll have to be careful not to get overheated accidentally.

I think today might be my second maudlin day in a row. I guess sometimes things will fall that way.

My DH said we should get a curry for tea. That will be nice. I will have a starter and poppoadoms. That is something to look forward too.

I have presents to wrap for one of the kids birthdays. If my hands will cooperate, but I do little enough around the house as it is at the moment. I have to try to get the presents done, no matter if they are not wrapped as nice as usual.

I will have a better day tomorrow.

@ThickFast

I guess you’ll have to be careful not to get overheated accidentally.

Yes, I am at risk of over heating or over exposure. But I wouldn't notice and noone would think to tell me.

Presents are wrapped. Think I will have a lie down and try and shake this mood. It isn't fair on my family. I love them so much and now I am just a burden to them.

I think the double hospital appointments this coming week is keeping my mood low.
I have a mannagram Monday and the consultant appointment Thursday.

The consultant appointment is my biggest concern, as I have no idea what he has decided to do going forward. Plus I need to ask him my questions and I am dreading the answers.

Onward and upward. I might be down inside but I have to put a smile on and take birthday pictures later on. I am boring myself with my moods. Oh, I just remembered the steroids, these might be artificial moods. Well that is a positive point to remember.

Just resting in bed after a full shower and I washed my hair and then got fully dressed...go me !

The come down from steroids is horrible, exh used to be miserable when he finished his.

@Nat6999

The come down from steroids is horrible, exh used to be miserable when he finished his.

Yes, it isn't nice.

Today has been a long day.

They found a lump at the breast unit. So they have biopsy it and send me home with a leaflet about Fibroadenoma, which it hopefully is. I will get results in a week or there about.

My DH sorted out the OT revisit and it is clear that I won't get the ramp. She also said she saw me driving off, implying to DH that I am just fine.

Which is strange as DH had to help me out the door and down the stairs. My mum helped me into the car and my dad drove off.

OT said they only do ramps for people who are referred though the local wheelchair services. Which requires a referral from the OT or my GP.

But wheelchair services only talk about inside chairs only, that is all they offer. They even print it in bold on the application form.

It has just made me so sad. My chest is hurting and wheelchair services will rightly not help us so that leaves me inside on my own from September. I am so sad about that. I will have to try and do something productive and try not to think about being in the house all the time.

My DH saw I was in a sad mood and took me out to a local beauty spot, where I could get out and lean on a stone wall and take a look at the nature.

I asked him to take me out again at the weekend that is something lovely to look forward too.

I guess my job search will be restricted to home based positions only and I will have to ask DH to take time off for potential interviews.

At least there is no need to waste money on a chair. I just need to readjust my expectations and I am lucky that I have a house to be in.

Just the consultant appointment on Thursday and that is the last medical appointment I have atm (except the CT scan which I am awaiting)

Then I can concentrate on seeing what I can do in the house.

Ugh, it sounds like a shit day, sorry to hear that.

That’s so shit. So basically you can only get help for a ramp if you have an indoor wheelchair. In which case, what’s the point of a ramp? None of it makes sense. I’m so sorry you’re stuck in that position. And that the lump is just something simple.

Also, not sure if you managed to look at the charity commission website yet. I did a quick advanced search and came up with a charity that seems to fund individuals to help buy mobility aids. I haven’t looked into it properly so not sure if you’d be eligible. Don’t get your hopes up, sorry to be depressing. It’s worth a look tho just in case. Hopefully the link works. Take a look at the contact details and their accounts which give more info.

apps.charitycommission.gov.uk/Showcharity/RegisterOfCharities/CharityFramework.aspx?RegisteredCharityNumber=228438&SubsidiaryNumber=0

And another one. This one seems new so there isn’t much info. But there are contact details.

apps.charitycommission.gov.uk/Showcharity/RegisterOfCharities/CharityWithoutPartB.aspx?RegisteredCharityNumber=1187297&SubsidiaryNumber=0