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?

I've got the prescription done for the B12 vials but our doctors are so dopey they haven't sorted the district nurse to one & do the injections yet. I've started using B12 patches & taking B12 supplements in the meantime, even if I only absorb a bit it will help me. Have you thought about looking on Ebay for some Aluminium ramps or getting a joiner to build you some? It might be cheaper than having concrete ones. My mum had a handrail put up at her back door for my dad, i find it useful to help me get in & out of the house.

NRTFT.

Compressed spinal cord?

I had similar to you. I have a few issues. I have been diagnosed with caudi equine syndrome due to hair line fracture on cocyix. Also compressed spinal cord (now relieved via surgery) that caused numbness and loss of function and has left me with a residual spinal cord injury (have to self catheter amongst other things). Basically after a fall I’d broken my back in a few places and just carried on until I couldn’t anymore.

If I hadn’t pushed for an MRI I’d be a quadriplegic now. Push for a diagnosis.

Nat6999 We have the OT visiting next week and we are hoping she will be able to help. But if she can't, we will be looking at the various diy options.

@TheRealHousewife

Luckily I had caudi equine syndrome ruled out by clear MRI scans.

My diagnosis is Dorsal Root Ganglionopathy which is a rare pure sensory neuropathy. This was confirmed by a nerve conduct test.

So I have a few phone calls to make this morning. Then I plan to do some exercise, I am self propelling up and down my dining room in the manual chair to try and strengthen my arms and I cycle on my recombant bike to strengthen by legs. Followed by shower and getting dressed.

Then I have promised to take the youngest two out on their bikes/scooters at lunch time. So DH has time to get their jokes out and help me and my chair outside.

I am really nervous of taking the girls out on my own. What if I fall out of the chair, I couldn't get myself up again:( DH has promised to come and get me, if this happens but he promises me I will be fine and I won't fall out. But I really want to get out of the house again and I need to be brave and try not to worry so much.

Wish me luck. I will report back later if I managed to get out or not.

To get their BIKES out

I am also drinking contrast solution twice a day until Thursday, which is the last cancer screening test. Hopefully the contrast solution won't affect my bowel adversely. But it needs to be done one way or another.

Good luck @Worrysaboutalot ... hope you get the right help/treatment.

@TheRealHousewife

Good luck *@Worrysaboutalot* ... hope you get the right help/treatment.

Thank you. There is not a way to cure me but I am on steroids and immune supressed to prevent me getting worse.

Well, it was lovely to get outside and ride around with my kids.

I enjoyed the sunshine. I found the flags very bumpy (thank goodness I have shock absorbers on all wheels) and the tarmac much smoother.

The old drop curbs are all too tall for me to use but all the rarer new drop curbs are fine.

Roll on ramp day when I will be able to go out any day. ( some point in the future, I hope)

How will you manage doing the school run when your DH is back at work? If you speak to school they may be able to get you some help or know if funding is available for a taxi if needed.

I will be house bound when my husband returns to work. :(

My DH has committed to helping me out and back for the first day of school but I can't expect that every day as he works 7am to 3pm.
The school said they would ring today to arrange help but they didn't ring and when I rang them, noone answered.

But I will ring school again tomorrow, see if I can get through.

Plus DH said he would take me out to Asda tomorrow after work, so I can have a whirl around a flat place :) Plus Asda cancelled my Fevertree part of the food order, so I can pick some up for me :)

Hi @Worrysaboutalot
Schools won’t provide transport unless you mean a private coach? Adult social care could potentially provide assistance but it varies from situation to situation. They will assess you.

@Worrysaboutalot I've been thinking about you over the past few weeks and just checked back to your thread today. I'm so pleased that you have a diagnosis and that they've managing to get things under control before they get worse. On the other hand, I'm really sorry for everything that your dealing with. The adjustment must be a huge challenge.

I was so pleased to see you'd been on a trip to the cinema, and are putting your new chair through its paces. I hope you got through to school today and that that bit of the jigsaw falls into place for you.

Just wanted to let you know that this random stranger on the internet has been thinking of you.

Schuyler Thanks, got that.

I got in touch with the school today and I hope that the plans they are putting in place will help my girls when I can't walk them in.

[quote remembersmellovision]@Worrysaboutalot I've been thinking about you over the past few weeks and just checked back to your thread today. I'm so pleased that you have a diagnosis and that they've managing to get things under control before they get worse. On the other hand, I'm really sorry for everything that your dealing with. The adjustment must be a huge challenge.

I was so pleased to see you'd been on a trip to the cinema, and are putting your new chair through its paces. I hope you got through to school today and that that bit of the jigsaw falls into place for you.

Just wanted to let you know that this random stranger on the internet has been thinking of you.[/quote]
Thank you for your thoughts, I appreciate it :)

My DH took me to Asda today and it was so fun zooming on the flat floors, no bumpy bump flags today!

I was cautious around corners and I did well to be, as many a trolley was surprised short me was there. One corner it was a shop mobility cart and me both cautiously looking around the corner. I went around as my chair is nippier than the big shopmobility cart but we laughed together and I met him another three times before we finished.

I bought alpro vanilla deserts, pack of fudges and two Fevertree water, clementine and blood orange. Clearly I am in a citrus mood.

In other news my dad has sourced a new drainage pipe which he is going too cut to size and use to line my crutches holders on either side of my wheelchair bags. So it is easier for me to put my crutches in and out of them. So I am looking forward to that.

Looking less forward to the cancer scan tomorrow but this time tomorrow it will be over.

Hope everything goes well for you tomorrow. I still haven't had any results from my scan on Monday, it's ds first day in Sixth form tomorrow, feel like it is only 5 minutes since he wouldn't let go of my hand on his first day at school, not 12 years, it's making me feel very old.

@Nat6999

Hope everything goes well for you tomorrow. I still haven't had any results from my scan on Monday, it's ds first day in Sixth form tomorrow, feel like it is only 5 minutes since he wouldn't let go of my hand on his first day at school, not 12 years, it's making me feel very old.

Six form, that is great. The kids will insist on keep growing up !

I haven't had a great day. School run was very hard for me, O struggled to get the kids in, other parents blocking the drop curbs. It was highly stressful. So much so that I had to go straight into the shower and redress in clean clothes to feel better.

GP rings me as I was on the way to the hospital for an CT scan, that he needed to urgently refer me for a CT scan as my liver enzymes were over double what they should be, sigh. He said any problems should be picked up in today's CT scan.

So in answer to the CT doctor question did I have liver problems. I had to say I don't know the GP has just rung me and said I might.

I am feeling very down today. I can't have anything else wrong with me, I just can't. Isn't it someone else's turn by now. :(

Have to go out a later for the extra blood test the GP ordered for me. Normally a month wait for an appointment, but I am going in 2 hours and that worries me too.

Any advice about how high liver enzymes can be nothing and just go away on there own, would be great.

I am quite proud of myself. I had forgotten to ask DH to take a set of ikea metal shelving upstairs before he left for the weekend. So I placed it just next to the stair lift and whilst riding the lift slowly managed to pull the shelving up behind me, one step at a time.

So it might have took a while and my arms are shaking, they are so tired. But I did it ! Shelves on landing in their new place.

Any advice about how high liver enzymes can be nothing and just go away on there own, would be great.

Yes, they can go up transiently with new medication (I'm not sure what you are on but I assume it is fairly recent). Depending on the enzymes it's not too dire if they are twice the limit (the threshold for stopping medication is often three times the upper limit of normal ) but they will need to keep an eye on them to make sure they don't go up any more.

Do you know which liver enzymes they were? Double doesn’t sound too worrying, might just need to keep an eye on it.

No, I didn't ask which enzymes (I was fed up that the tests were not clear)

Yes, I am on an new oral steroid and an new oral immune suppression tablets. So hopefully my body will chill out and this liver enzymes will drop back to normal.

The nurse said I would hear back on Wednesday if the last blood test showed anything (new), so if I get to Wedneaday and hear nothing everything is fine :)

Yesterday and today ai have felt really lightheaded and bobbing. Like I am sat on a float in a pool, very peculiar feeling.

That could be the steroids, is it a bit like feeling high?