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?

Glad your MP was useful too, you are lucky to have that support.

I am getting breakthrough pain again :(

I don't know how long to leave it, will it keep getting worse ? Maybe I should put up with it as long as I can this time.

I don't know if that means my painkillers are losing efficiency or the pain is getting worse.

Now I now I am stuck with this condition for life, I can't keep upping the medication.

I'm on slow release morphine tablets, but also have Oramorph for any breakthrough pain. It's a liquid, and I either have 2.5 or 5mls.

If I need it a lot, I have to make a note of how many doses I've had, and then the GP knows how much to increase my tablet dosage by.

I don't know if you can have Oramorph with the pain meds you're taking, but might be worth discussing it with your GP.

What painkillers have you got? I don't know if it is the weather, I've been getting electric shocks in my feet & legs all day.

Thank you for the suggestion of Oramorph. I will remember that, when I see the doctors next.

But I really thought the steroids would work. I don't want to keep asking for more meds if I can avoid it.

Currently on 700g of Gabapentin three times a day and 20g of Amitriptyline at night.

I was wondering if the new drugs are make me (hopefully temporary) worse. The immume surpressant or the new oral steroid ?

You can Ask for a referral to a pain clinic - they might be able to offer some different options ?

OP your Gabapentin and Amitriptyline will be in mg, not g.

Can I ask why your original thread got deleted?

My ex husband always used to say his pain increased when he was on steroids, usually for a few days afterwards. I'm on Gabapentin & dihydracodeine for my pain, I take 2 x 30mg dihydracodeine up to four times a day, you can take up to 900mg Gabapentin up to three times a day & amitriptyline up to 50mg, you can also swap Gabapentin for pregablin if it isn't working as well as it should. Have you thought about asking if your consultant would prescribe savitex which is medical cannabis? I use CBD oil so I don't have to take as many painkillers & have used cannabis when my pain is really bad, one advantage of living next door to the local drug dealer.

@notapizzaeater

You can Ask for a referral to a pain clinic - they might be able to offer some different options ?

Good idea, I will ask if that is possible.

@AKissAndASmile

OP your Gabapentin and Amitriptyline will be in mg, not g.

Can I ask why your original thread got deleted?

Yes, my mistake on the amount definitely mg not g.

I asked for my first thread to be deleted, as I was upset and I was hoping that it was a temporary problem that would go away.

Nat6999
Savitex can only be prescribed by an consultant, so I will ask mine next time I see him.

I am ringing the doctors today to see what they recommend.

Hi OP I’ve just found this thread and had a skim through the last few months.

I have damaged nerves in my neck/head after a car accident. I’m 25 but this started when I was 17.

Pain and main medication is such a tricky thing. I was on anatryiptline (sp?!) for a few years and then it made me tachycardic (heart rate got too high). Coming off that was interesting I realised that I hadn’t really been able to feel properly happy for the few months I was on it.

Gabapentin was what we tried next over a few years I think got up to 900 3 times a day. It did help but I found that it would help for 6 months or so and then my body would get used to it and we’d have to increase the dose again. After that dose neither me or the go wanted to increase it any further so we made the decision to come off it. Mostly just to see how much it was actually doing.

I struggled with my memory a lot on gabapentin, that and being able to do any kind of arithmetic, I couldn’t add up more score in a board game 😂😂 Coke a cola also made me feel drunk (I was a cheap night out)

I was pleased to find out that coming off the gabapentin wasn’t as horrific as I thought it would be. When the pain really flared up it would be a lot worse but my general base level pain was manageable. Which probably meant that gabapentin wasn’t doing as much as we thought it was.

I had a pain clinic referral which I thought would solve everything (now I know that no doctors appointment will solve everything) I did find them quite dismissive and gave me lots of random non tablet based things to try. Like a cream with extract of chillis which burns your skin a bit so that you feel the pain less. That one was a bit random.

They did give me a TENs machine which is perhaps the best non tablet pain management I’ve found so far. Not sure that will work with your numbness though.

More recently I was on a more experimentally tablet from a neurologist. It had few side effects and did put a damper on the pain. I’ve had to come off that now too to TTC. I hope it doesn’t take too long because I don’t want to have to tell work about the big change in my pain levels.

I don’t know if that’s useful to you. I thought it might be handY for you to see how pain and the medication is managed over several years. It’s all more transient than I think I first thought. Especially when you’re in the thick of it.

It’s been great to see how you’ve kept going. When my pains really bad I just have to tell myself that this time will pass. Because there’s just nothing else you can do sometimes.

Sending gentle hugs

pinkplantcase
It was helpful to hear.
What was the "more experimentally tablet from a neurologist" ?

candesartan, it’s used for high blood pressure but they recently found that it also helps people migraines. As my pain is a bit Similar to migraine they thought it could help. Which it did!

Not sure it’d be much use for pain elsewhere in the body though. It would make the pain in my head/neck feel more like pressure than pain.

Sativex is only licensed for spasticity in MS and not neuropathic pain (in MS or any condition). If you wanted to try medical cannabis for neuropathic pain you may be interested ProjectTwenty21 drugscience.org.uk/project-twenty21/

Not sure why my post has been hidden by MNHQ. Maybe they will put it back in a while!!

Don't put all your hope in pain clinic, i went for months, every appointment I was told that the next appointment I would get better pain relief but didn't get anything. When I finally got to see the consultant, he spent all the appointment trying to get me to admit the pain was all in my mind, when I refused he discharged me.

PinkPlantCase
I see, I have arm and leg pain so probably not an idea for me.

mrpumblechook
How funny of them, but your post is back now. I will go and read it.

@Worrysaboutalot

mrpumblechook How funny of them, but your post is back now. I will go and read it.

I suspect there is something that automatically removes posts with certain words in them. I'm glad that they have put it back as the project is totally legitimate and legal.

Nat6999
Thanks for the heads up re pain clinics.

Especially in my case it is all in my head. As my legs and arms aren't really hurting it is the damaged nerves in my legs and arms tell my head I am hurting.

I am going to email the consultants secretary and ask for advice.

Ps. My gp has upped my afternoon and evening dose of Gabapentin from 700g to 800g that should help me for the next few weeks.

I found cbd to be the most helpful non medical thing for pain relief when i was suffering due to Fibromyalgia & ME/CFS, I managed to reduce my prescription pain relief to just taking it at bedtime instead of needing it all day. I still use it now even though I have had to increase what I take during the day again. I vape it mixed with normal vape juice.

Would a nerve blocker work better then ?

Is there a support group for your condition ? My DH condition has a Facebook group and tbh I've found loads of stuff from there that I can then ask our consultant about.

@mrpumblechook thanks for that, I have neuropathic pain from ms and have signed up

notapizzaeater I think there are too many nerves to block.

I can't find any support groups, it is too rare. The hospital I am at in the north west area diagnosed 4 people over 6 years with Dorsal Root Ganglionopathy. So maybe 10 people in the UK yearly maybe 5. In comparison in the UK 7000 people get diagnosed with MS.

I rang the brain and spine foundation and the lovely nurse hadn't heard of it but checked there medical database and read some of it out to me but no support groups.

I have found one lady who by chance is going to the same hospital. By her 5 year old unanswered post on a health forum.

I might start up a website or Facebook page and try and find more people. When I have the time and energy to do it.