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?

Not working so far but I know it will take a few days and I have to be patient.

So I will be sleeping sat up on the reclining sofa for a few nights until it starts working, as my DH is working full time from home and needs some sleep!

When I was first I’ll i couldn’t sleep in bed anyway. I needed to be propped up with cushions and sit upright to feel I could breathe. It was a terrifying time. But it gets better and you will too. How long now till your appointment?

It may not be but some of your symptoms sounds similar to someone I know who had lymes disease but it had been dormant for almost 20 years after the original tick bite.

Just under two weeks to go !

I don't think it is lymes disease as I don't have headaches, rash, sore joints etc. However I will wait and see what the neurologist thinks.

Good luck with the Gabapentin. I was on it for 7 months, and was utterly off my face on it.
I pushed for (the much more expensive) Pregabalin, which had much less in the way of side effects. So you know there’s a Rolls Royce option there for you too. Fingers crossed for you.

Thanks HollaHolla. Good to know there are options past this one, if I need it.

I have found that if I spread out my Gabapentin across the day, I can't get to sleep at night, as my pain is worse at night.

I accidentally took my first 2 a day dose together at night, instead of spaced across the day. I managed to get to sleep that night. Though I wake up later.

Then I realized my mistake and took three well spaced apart ones and couldn't get to sleep at all due to pain.

Would I be OK taking one in the morning and 2 at night, do we think ?

Added complication I take pills for a bowel condition at midday. I can't take ither pills 4 hours hours before or after.

Morning I take thyroid pills, multi vitamin, 1 gabapentin
Midday I take 4 to 8 bowel pills
Evening I would take 2 Amitriptyline , 2 gabapentin.

I was told to take both Amitriptyline at night.

You need to speak to your doctor about the gabapentin doses. There are options to ramp up the dose, but this MUST be done in conjunction with your doctor. There’s a titration method they use for stepped doses.
I would suggest you contact them, though, as if the pain is keeping you awake at night, I’d have thought the dosing isn’t quite right.... good luck.

Best of luck with it all OP. Discuss gabapentin with your doctor but just to say if you are taking 3 pills a day they should be spaced 8 hourly. If and when you take 4 a day ( as advised by GP) take 1 in the morning, one in the afternoon and 2 at bedtime .

The GP told me I had to wait two weeks before the level was put up and I can't not sleep for two weeks :(

Guess I will spread it morning dose, tea dose, bedtime dose and see what sleep if any I get.

I am a "starter dose of 3 tablets a day but don't worry, as we can increase it after two weeks to a suitable level if you need it. "

It won’t do you too much harm to take one in the morning and two at night and if that helps you sleep it’s worth it! I am always juggling my dosage depending on how I feel.

WorkingItOutAsIGo
I was worried about taking two at night, I chickened out and took one at 4pm. Will take my last one at 9pm and see if I can sleep.
Good to know I can do it, if I need to.

I didn't get much sleep on the sofa last night. Too much cold and and pain in my feet. So I am doing 1 pill in morning and 2 pills at night today, I need the sleep. Then I will ask doctor tomorrow if I can do an extra pill at night officially and going forward.

You poor thing. Have you ever tried meditation tapes? It is very good for chronic pain which is what you have right now - helps you relax and disassociate from the sensations a bit.

What size pills have you been given?

I did try a free trial of headspace app, a while ago and felt it was good but didn't buy it. I think I will have a look at it again, maybe buy it this time.

The pills are 300g Gabapentin with a directive of taking 1 pill 3 times a day.

I did speak to the pharmacist on Ftiday and she said that taking two at night would be medical acceptable but she couldn't tell me ut was ok, I had to check with my fur Monday (words to that affect, I am too tired to remember exactly)

Lying down in bed to have a break from the lovely children noise and my feet are like ice blocks under the duvet, with sharp pains running along my soles at random intervals.

Just over a week to go. I really hope this neurologist will listen and help me.

Off to relook at headspace app

Fur = Dr

Got permission from doctor to increase Gabapentin dose from 3 to 4 pills a day, the extra being at night. Hurrah. So morning, afternoon and evening x 2

Also download free mediation app to try as well.

I have had similar symptoms for over a year (It’s much worse & severe on hot days) and I’m currently under neurology. I’ve had all the tests for MS or Myasthenia Gravis and they haven’t ruled them out. Yet!

What has helped is propranolol. I had weakness on one side (but sometimes was my legs or arms) .

My neurologist is amazing! He thought I could have had a nasty hemiplegic migraine - it’s caused lasting muscle & eye damage.

My next appointment with him is via telephone but he has phoned me to see if I’m ok during lockdown & so has my eye consultant.

It’s scary. At one point I went completely blind, legs like jelly and couldn’t even swallow!

Boredinthehouse Sorry to hear about your illness Glad your doctors are checking in with you, though this lockdown.

It is strange how you just learn to cope with things. The lack of good sleep is getting me down but hopefully tonight will be a good one.

@Worrysaboutalot I agree and unfortunately my meds also caused insomnia to begin with - but a few adjustments and finally I’m doing ok.

Keep getting vivid dreams and sitting bolt up right in the night with my eyes wide open feeling fully awake - but I am able to fall back to sleep again for now.

This time a few months ago I’d be feeling ready to run 10k at 3am - but without the ability. Very very strange!

Listening to pink noise helped loads at night!

It is the cold and pain that wake me up and keep me awake. It runs down my feet and hurts so much it wakes me up.

I like the pink noise suggestion, I found an 10 hour YouTube video which I might try tonight. To help me focus on something else not my feet !

How is the increased dose helping?

The increased dose is helping a lot, thank you for asking.

Still have the numbness, I get more cold and some pain in my feet during the day but bearable. Evening is less cold and more pain in my feet and some pain in my leg but far less than I was getting. If it stays at this level or improves I will be happy and then I can restart sleeping in my bed, rather than my sofa!