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 suppose everything depends on what the neurologist decides, when I meet one.

It's a horrible feeling not knowing whats going on but knowing somethings not right. I've had an elevated creatinine, which can cause muscle problems apparently, but not had any tests to find out why the creatinine is raised. Spent today in agony with aching legs, so been on codeine, which causes other problems in its self. Hope it gets sorted for you OP

Yes, you are right. Hope your legs feel better soon

I have had a phone call from Salford, I have an early neurology appointment in May just 2.5 weeks away !

The admin bloke explained their current procedure.

1. I will receive a phone call from the neurology consultant to go though my symptoms and history.

1. Then if the consultant think tests are needed I would go to the hospital for these tests and return home.

1. Then the consultant will ring back to discuss test results and any thoughts.

I am very pleased that it is so soon, not long to wait at all. :)

My gut feeling is that I won't be put forward for more tests, as I have had a raft of them recently but of course it is up to the consultant and I will do whatever they think is best.

I am hopeing for reassurance that these symptoms are temporary and not likely to return.

If I could get an answer as to what this is and a possible treatment, I would be delighted. But I know it is unlikely to get an answer straight away and maybe I won't get one at all.

I had to give in last night and restart taking Amitriptyline again. My feet were getting worse each day and I was finding it harder to sleep with my feet being restless and painful.

Hopefully in a couple of days the pain in my feet will subside again. But at least I now know that medication is not causing my numbness, as it stayed even after 5 days of the new med.

5 days of NOT taking the new med.

I'm glad you're being seen by neurology soon. I hope you get your answers

Thank you

I'm so pleased to hear you've got that appointment OP. Make sure you have every single symptom written down, when it started and how long it lasted. Sorry if that sounds obvious but you need to ensure they have all the info. Ultimately, you need a full body MRI in my opinion. If they don't suggest this, you need to ask why. Do let us know how you get on, best wishes

Please, don’t wait, push and shout and demand. Do not let them leave you waiting. I don’t want to freak you out but my mum died last year and in the time they spent shuffling her around she could have received treatment and potentially survived.

Badassmama Sorry to hear that you lost you mum like that. That sounds very difficult to accept.

Bluesheep8 Keep on with the good advice, I need it :)

My GP did tell me to start a diary, it is a scruffy bit of paper with notes all over it I will type it up this weekend and keep it updated until my appointment.

Hi OP. Been following for a while and very very glad to hear you have a bit more of a plan now.

I'm another with an MS diagnosis (in 2006, from first symptoms in 2004) - my symptoms, much like Mouldiwarp's, are generally sensory. I started with numb feet, heavy, tight, numb legs, the infamous MS hug, pins and needles, burny patches, L'Hermittes sign (the electric shock in the neck), terrific fatigue, urinary incontinence, persistent right hand tremor, numb left thumb and forefinger. Because of my type of diagnosis all of that is there all of the time though it comes and goes with severity, and it really is something you learn to find strategies to cope with. No one would ever know; I work full time and have learned (ok, still learning...) to pace myself.

My worry for you is not that you're not taking it seriously enough - believe me, I have a fair idea of how daunting and frightening it is likely to be - but I worry that you're going into this thinking 'I just want reassurance that it's all ok and that my symptoms will go away; my spinal MRI was fine'.

This is the point that you need to get Teflon. Shrug off that agreeable, accommodating nature and don't go in to your appointment thinking 'oh it's fine, whatever the consultant says is lovely, and if he doesn't think I need more tests then that's great'. It's not great, because it still leaves you with the symptoms that you're living with every day. Please believe I'm absolutely not diagnosing you with MS, or any other neurological problem - but you have to be your own advocate now you're in the neuro system. Use your clear intelligence and don't let yourself be fobbed off. A very clear timeline of symptoms, no matter how insignificant you think they are - as Bluesheep8 suggested - is a very good place to start.

Wishing you courage. The road is bumpy for any kind of neuro diagnosis, and can be a long old road. Whilst you can't expect a quick diagnosis (very rare, given waiting times for tests and appointments!) you can go in with a positive, but firm, attitude that you expect to be properly assessed. Get Teflon!

ChestnutsStealthBoasting
Good advice. You are right, I have to watch my desire to want this 'over' with no diagnose.

I need to push to get answers, even if they can't fix me.

Attagirl. That’s more like it! ☺️💪🏻

My experience of neurology is that it is a newer and less certain branch of medicine. Their diagnostic tools only get them so far. It took me more than two years of testing - done privately so there was no NHS related delay - to get a diagnosis and even then it’s one that’s not 100%. So don’t expect it to be a short road - but remember you are after treatment as well as diagnosis! Some treatment can start regardless. I wish you well.

Glad the appointment has come through and you're being seen quickly :)

Thanks

Great that you’re getting some intervention soon.
Although I’m not someone with MS, I do have spinal nerve damage from surgeries, and cauda equina. I think I said before - be belligerent. Polite, but insistent. You will need to be your own best advocate, and continue to push if things aren’t quite right. I’ve said ‘well, I’m sorry; I don’t find that acceptable’, on more than one occasion. Do it with a smile, and see how far you get.
Shy kids don’t get sweeties, and all that.
Good luck. X

Yes I have accepted that I need to push for answers. Not that I want them but I need to try.

The pain in my feet has been increasing over the last few days, despite taking Amitriptyline at night.

Plus my feet are like ice blocks too. I am wearing thermal bed socks under thick sports socks and using a microwaveable heat pack and I can't heat my feet up.

I thought I had a circulation problem from not enough exercise (as I am not walking properly).

Last night I didn't get much sleep between the pain and ice feet. So I rang the GP back who is quite sure my cold feet are an nerve issue too ! She said if it was circulation it was likely to affect my hands too, I would see colour changes and be able to warm them up.

Sigh, another nerve issue. At least I am being consistent.

So now I am to take double Amitriptyline at night and start taking Gabapentin...more medication :(

Lets hope I get some sleep tonight.

So sorry for you. Gabapentin is great just ramp it up slowly as it can make you whoozy. I find a little dose makes all the difference to my pain.

Oh and I had icy feet at the worst point and now they are fine!

"Gabapentin is great just ramp it up slowly"

I am to take one Gabapentin today, two tomorrow, three tomorrow. All alongside two Amitriptyline. Wait two weeks and if I am still struggling they will up something.

Good. I hope it will help.