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.
‐----‐

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?

Nat6999
Your son sounds like he is a big help to you and your husband. I bet your son has more empathy than an average teenage because of helping his dad and you.

My sleep is still disturbed. My arms are hurting still and my feet. The pharmacy forgot to give me the top up painkillers my doctor ordered for me on Friday. They are smaller than my current pills so I will have to put up with the pain until Monday.

On the bright side it is DD3 birthday and it has been fun taking pictures of her and seeing her joy opening her presents :)

Shame DD3 noticed that the presents were wrapped badly my hands are just not working as well as they usually do, I hope it is a steroid side effect and not further nerve damage.

Later we will have a birthday tea and I am planning to have a small slice of birthday cake, as it is one of my favourite foods and I will take the consequences (usually bowel related)

Watching DD2 and DD3 play together is so wholesome

What pain relief have you got? With having Fibromyalgia & ME, I know what you can increase doses if the dose you are on isn't helping.

On 600g of Gabapentin three times a day. Moving onto 700g from Monday.
20g of Amitriptyline at night.
Loads of other meds but they are not painkillers.

Everything seems to wipe me out. Just had a shower which was hard with my arms but bless that bath board. Stops me getting dizzy and helps me in and out.

But having dried and dressed I am having a lie down before I go downstairs. I need more energy. Everything is more difficult when your body won't cooperate.

You can increase your gabapentin up to 900mg 3 times a day, have you got any dihydracodeine, tramadol or cocodamol 30/500?

I'm the same, going to the hospital has wiped me out, I've only just got downstairs. I'm trying to do some investigating on rules for wheelchair accessible properties so I have all the arguments why I can't stay in my flat because I'm sure that is what the council will say.

The doctor offer to put me up to 900 but I didn't want to do that. An 100 increase was our comprise.

Hope your council helps you with housing.

Extra pills arrived. Hopefully pain free night later.

I am suffering with my food. The cake was a terrible idea (which I did know in advance) Let's just say, I might have no pre warning of an accident but combined with the stairlift and slowness, it made me very sad.

I have had many accidents with my bowel problem but at least I knew I had a problem and could at least try to get go the bathroom. I don't get any warnings now, I will have to learn to adapt but it is hard.

Have you got some incontinence pull ups? I have overactive bladder & they save so much washing. I buy the Tena ones online from Boots, cheapest way is buying 8 packs which saves £24 & you get Boots points as well which I save for treats because I deserve them.

I have that problem sometimes, plus I'm urine incontinent, so I wear pull up continence pants. You can buy them in bulk packs from Amazon. I get mine on prescription.

It's another thing I've had to come to terms with, but there have been many times I've been thankful I was wearing them. Less washing to do.

I usually wear thick stick in pads which catch my wee leaks if I have left it too long between toilet breaks.

But my bowel is not normal and when I have accidents it is a high pressure hose of liquid which my pad/knickers/leggings can't deal with. Most incontinent pants just talk about wee, so I never tried them.

As I am at home, it is just extra washing. But I am worried about the hospital visits maybe I should try them then. However I am worried about my DH. He has took on so much around the house and is helping me so much. What if he decides this is the final straw ? I know I probably sound daft talking this way to you lovely ladies who do use these aids but it is a hard thing to accept that I might need them.

Can I recommend period pants such as Wuka or Modibodi. Their websites also say they can be used for incontinence. I've not used them yet for that but have as I am perimenopausal. I have just increased the number I own with a view to wearing them during the week on holiday or work as I wont be able to access a loo as quickly.

Pericombobulations I might have a try. But period pants only claim to help with period and wee, not liquid poo.

I spent part of today arrange dates for precautionary breast cancer test and a bit more looking at mobility aids. I still have faith that the steroids will work but just looking in case.

Steroid dose number 5 this week and I have now completed level 2 of my recumbent exercise bike twice in the last three days but my muscles don't like it. They ache in a strange way, probably due to the numbness and damage nerves.

Anyhow giving my legs a break today and tomorrow. As Sims 4 Nifty Knitting stuff pack is coming out tomorrow
I will have another go at the bike on Wednesday.

The builder was back again. The OT will pay for a half step and a hand rail down the unsafe steps outside.
We can privately pay for a ramp but that would be £3000.

So we have 3 options.

1. Get the stairs done now even though I will never use them, at least in an emergency situation I can get to the pavement on my own. Currently I am reliant on my husband to get out the door.

2. Ask OT (again) to fund a ramp. They paid this builder £30k to do one around the corner from me. Builder says the OT needs to apply for a grant on my behalf. But that is only done for wheelchair users.

3. Ask OT if a decision can be postponed for three weeks and DH & I can talk to the neurologist consultant and try and pin him down, how much improvement can I expect in my legs and how long will it take ? Will my balance improve ? Will I have to have wheels to make journeys outside the house safely or not.

Unless I get better it looks like I will be inside for a long, long time. I am dreading September when I will be on my own.

Or maybe DH DIY a ramp and hope it is safe enough. Certainly cheaper than £3k

Sigh.

I think I'd go for option 3, when you'll have more of an idea if you're going to need a wheelchair long term.

Is there an appeal process for the OT assessment? Would a report from your consultant help to get you the ramp? Have you looked at a Disabled Facilities grant?

Nat6999 No idea on appeal. The OT has to apply for the grant from the council.

Motoko
I agree with you. I would prefer to check with the consultant first.

My DH wants to push the OT to to the grant application now. I said I wanted to wait to see the consultant first.

DH said the consultant DID say the nerve damage in my legs were not going to get better and I wasn't guaranteed any improvement.
I said the consultant said I might get 10 to 20% improvement. DH said in that case you shuffle faster, then you still need a chair and a ramp.
Different words but that was the drift. I surprised myself by getting teary.

Just a few days ago, last time the builder came, DH hadn't thought I would need a mobility aid at all and now he seems to have accepted it and I still haven't.

I have three weeks left to see improvement, including two doses of steroids. I need to wait and see, I might get better. I need the hope.

Steroids can work for 3-6 months after being given. Has your consultant said anything about doing plasma exchange?

No

I am so lucky with my husband, he is so supportive (and cute). He is very 'if you need it, buy it' re mobility aids.
Why I was worried I don't know, just feeling very insecure atm. But I still want to wait to see consultant first. He wants to just buy something today, lol.

I just want to know what will get better and when first. No point wasting any money, if we can avoid it.

Tomorrow I will do the bike exercise and I have to put the clean clothes away.

Nearly ready for dose five on Thursday.

Dose five out of six done. Just one week to go and two weeks until I see the consultant.

Hopefully by the time I see the consultant, I will feel some improvement and maybe consultant can give us an idea of how he sees me in the future.

Then we can make definite plans re ramp and mobility aid, if that is still needed. As I still have three weeks to see improvement in me.

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