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?

Look at your local council's website. They should be able to help with shopping and you can refer DH for a carer's assessment there.

PastMyBestBeforeDate I can't bother the council, I am not properly ill or anything. I might wake up tomorrow and feel 100% again. I need to leave that help for those who really need it. Thank you for the suggestion.

I will try ringing Asda again and see if I can get though to a person.

I think the same thing is likely to happen this time. I don't see more scans or treatments in my future. I see them telling me I should just put up with it (like the GP said about my burning hands and feet)

No, I think the fact that you needed to be referred twice to a neurologist in 18 months with different symptoms means they will look into it this time. Hopefully, the symptoms won't last long but that doesn't mean it doesn't need looking into.

I am unsure if it would be reasonable to ask the doctors if they have sent the urgent letter to the neurologists or not. I am leaning to very rude of me to chase, so I will just have to hope it has been done.

It would NOT be rude of you to chase, OP. You should be having tests/scans NOW, not in 6 months.

And believe me, being referred twice in 18 months with a different set of neurological symptoms will be taken very seriously by a neurologist.

The fact you had symptoms slightly different but common to ms symptoms I'd another indication of relapsing remitting MS.

Of course it might not be that but it seems very odd considering your presentation that this has not been mentioned at all as a possibility. MS is common and your GP would have had a number of patients with it since becoming a doctor.

Do push for a referral. Even if you get better in a weeks time and go back to normal, the illness could be there in the background and the quicker you receive treatment, the quicker you can delay the relapses.

I am reading your posts. I don't know what to say. It is horrifying to think this might happen again and again.

TBH I am clinging to the clear spine scan as a reason to be optimistic, yet I do worry.

I still don't think this is MS but if it was how long will it take for these symptoms to go ?

I had thought I would cancel the neurologist referral if I got better before it happens. But prompted by your posts I said as much to my husband, who agrees with you lot, that I should still go even then ! So I will keep the appointment, even if these symptoms have gone by then.

"And believe me, being referred twice in 18 months with a different set of neurological symptoms will be taken very seriously by a neurologist."

I hope you are right. I really felt like I was wasting his time last time.

I had thought I would cancel the neurologist referral if I got better before it happens. But prompted by your posts I said as much to my husband, who agrees with you lot, that I should still go even then ! So I will keep the appointment, even if these symptoms have gone by then.

Yes you should absolutely still go even if your symptoms get better as this usually happens with MS in the early stages (if relapsing and remitting MS) and if this is what they diagnose you will get treatment which will reduce the chances of further problems.

Symptoms can come and go OP. Everyone is different. In my case, I started with visual problems followed by rapidly spreading numbness. In a matter of a few weeks everything slowly returned to normal.

I had an MRI scan and a lumbar puncture and was diagnosed with RRMS. That was in 1999.

A few weeks I can cope with. The thought of being like this for months is too hard to accept.
I just thinking of how to get though today and trying to find a few silver linings about bring home with all my family and being loved. I am so blessed with my family, I should take more time to remember this.

My DH has finished work, he started at 7am. So he is parenting kids and I am going for a lie down.

Have had multiple neuro symptoms for a year, had MRI's, scans, x rays, bloods, electro muscle test...seen a rheumatologist, spinal consultant, brain scan etc etc and was having an urgent neuro appointment in May...postponed until December at the earliest..I have had to leave my job due to this ... I did receive a phone call prior to the lockdown saying they didn't find anything 'sinister' and would be reviewed by the neuro specialist in May...which isn't happening now...sort of in limbo, on so may meds and totally fed up as unable to leave the house atm. I have no idea what's wrong, but at least it's not 'sinister'...which isn't the least bit reassuring! I sympathise with you OP

I've been numb from the bust down for over two years now. Some MS symptoms never go away.

Lemonlady22 I am sorry to hear you are in limbo. I hope you get sorted soon as possible.

NotOneToShoutOut on no, that is not good. Have the doctors said it is permanent or might it still go over time ?

If it’s a typical early case of relapsing remitting ms (i wish they’d done the head MRI for you, not just the spine) you’d expect the symptoms to built to a peak then get better by around 6-8 weeks... for me the improvements, once they start, happen fast. please don’t feel ‘rude’ making sure you get the help you need to get better... it’s “our NHS” isn’t it? That counts you too, so don’t just sit quietly and suffer :’( you can easily fall through the cracks if you don’t follow up on your care.

I will chase it up. I am keeping a diary so I can note when these symptoms go away. Maybe 6 weeks, I can do that. Not that I have any choice in the matter.

Whatever the underlying medical issue is (and you know I hope it’s something easily fixed) you can get through so much more than you ever think you can, really, I promise. You just do, and you look back later and wonder how on earth you did it.

Are your hands still numb? (I’m uncertain from your post- sorry if you’ve answered that.) Consider having your b12 checked when you can - b12 deficiency can cause numb hands and feet (and if you’re like me some people need injections as they can’t process it through healthy b12-rich food)

I’m so so sorry you are going through something so horrible while the world is crumbling around us. It’s cruel that you are so sick while everyone is too focussed on other illness to help you. But thank goodness it’s not cauda equina, and that there are no lesions on your spine. I just hope they find out what IS going on soon so that they can start helping you get better.

notonetoshoutout I'm sorry to hear some of your symptoms have been more long lasting.

I’m really sorry to have to type this and if I scare you OP but this is exactly how my MS started. And I didn’t get to the stage of bowel and bladder problems.

I was seen very urgently. Had lumbar puncture and MRI within one day.

Even now, in the middle of a pandemic, I am gobsmacked that neurological symptoms plus loss of bladder and bowel function is not considered to be an emergency MRI.

Honestly, I would go to a different GP.

Just to reassure you, 20 years later, I have only ever had two mild episodes. If the leisions are minor they lay not show up on the MRI if it is done too long after the onset of symptoms, so I’d be wanting to know quickly.

Good luck

FloutMyArse Yes, my vitamins were checked in January. I was low in vit D and Folic Acid. Which is now corrected and confirmed in February that all my levels were right.

I have had full blood tests last week in hospital and they double checked my levels were still right, which they were.

My GP said they check bloods, then thyroid, then diabetes for burning hands. That is what they did for me.

I keep hoping this will turn out to be a vitamin problem, easy and cheap to fix. But not so far.

everythingthelighttouches

I did have an emergency spine MRI and everything was clear. No tumours or inflammation, which is brilliant.

Another one with benign MS here - diagnosed 24 years ago. A lot of similar symptoms initially - numbness that moved around, burning sensation. Was numb from the chest down for about 18 months. Could still ‘feel’, but it was as if there was something in between. Very tight feeling around legs, which felt as though they weren’t working properly. Felt like I had sand/eggshells in my shoes. Electric feeling when I bent my neck. I also had a couple of patches that I can only describe as feeling like sunburn - intense itching that when touched were very sore. Numb hands that again didn’t seem like they were working properly (secretary and I could type, but just seemed uncoordinated). IV steroids for the hands didn’t fix them (straight away) but fixed the numbness elsewhere. Oh, and severe vertigo for a while. I’d move my head and I’d be flat on the ground - that was the worst.

My symptoms were almost exclusively sensory, which I believe tends to lead to a better outcome. I worked throughout. Very little treatment available in those days. BUT after the initial four or five years, it all settled. Occasional ‘echoes’ of previous symptoms, but that’s all. No one I work with has a clue.

What the consultant said to me at the time was that people only knew about the bad cases (and let’s face it no-one in a soap or film ever has a mild version of anything) but that many people coped just fine. There are also far more effective treatments these days. I do think you should have a MRI of your brain though, and probably a lumbar puncture. Good luck Op.

My lumbar puncture didn’t identify MS, but my scans and associated disability certainly do. Such a weird disease. So pleased to have been prescribed a drug (Tysabri) that has kept me relapse free for 2 years now ❤️