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.
‐----‐

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?

Thank you remembersmellovision, your kind words made me cry (in a good way)

Bluesheep8 Todays GP said she would chase Fridays GP and check that he had send a 'expediting letter to neurology'. Hoping that will speed things along if possible.

worrysaboutalot that's good, no one should be having to chase anyone though, the first GP should have made an urgent referral to neurology. From memory, my first MRI scan was done within a couple of weeks. The fact that you were told you'd be waiting months for a neurologist to even see your notes horrified me.

My understanding of ms is that you get an MRI of the brain before the spine, although commonly both with indicative symptoms as the disease can show in one but not the other but most commonly in the brain.

What makes them do sure it can't be ms?

rarediseases.org/rare-diseases/fnd/

I am not saying you have this but perhaps read through and try some of the suggestions. Stay hopeful that it will improve.

My MRIs are always brain and spine because MS lesions can show in one or both areas.

What makes them do sure it can't be ms?

Also, this. Because MS by its very nature is unpredictable in the extreme. That's why symptoms vary so greatly from person to person. I do hope you have your referral and MRI soon, OP.

Sounds awfully like MS. Why the hell didn't they do a brain MRI? Lots of people with MS don't have spine lesions but have them on the brain. You also need one done with contrast.

Personally, I would be pushing for a brain scan ASAP. Its madness that they think its exceptable to leave a person like this.

Please PM me if you want to talk.

You also need a lumbar puncture to confirm or refute an MS diagnosis. But first the brain scan with contrast.

Noone (outside here) has suggested or mentioned MS and surely the clear spine scan suggests otherwise.

It is not normally times, if the hospitals were open fully I would be seen sooner vit will be, will be.

I have set 8 alarms on my fitbit, at 2 hour intervals to remind myself to go to the toilet and drink a glass.

I need to buy a better stick, the adjustable hiking one keeps getting shorter on its own.

The rorse big at the moment is the not knowing what is wrong and the band of pressure around my chest. It doesn't hurt but it is very uncomfortable.

Plus I can't think of anyway to cheer myself up that doesn't involve eating or drinking, which makes me sad.

Ignore spelling I am too tired to think straight.

You need a scan of your brain to rule out MS.have you looked up MS symptoms?

Hi worrysaboutalot I had this last year, It turns out i have an inoperable tethered spinal cord.

I went private to see a neurologist and neurosurgeon. My neurologist app on the nhs took 6 months to come through so I'm pleased I got some answers by going private.

My legs are constantly tingling. My legs randomly burn and I loose feeling in my feet. It's a slippery slope for me but it is what it is.

Wish you all the best on your diagnosis. Feel free to dm me if you would like more information.

A clear spine MRI doesn't mean its not MS. You could have them in the brain instead.

Also the band round your chest could be anxiety but its also a symptom of MS (the MS hug).

And just to say ...I had the ‘MS hug’ with myelitis so it’s not a definite sign of MS.

I've had 4 MRI scans over the years, 3 with contrast. Nothing to see on my spine, the lesions are in my brain.

Sorry just to add, no one mentioned MS to me either in the early stages. They were looking to rule out different things as they went along. MS doesn't tend to get mentioned early on unless the patient raises it themselves.

Wheredidthebackboobscomefrom I am so sorry to hear of your spine condition, I hope you are doing as well as possible at this time.
Luckily I had a full spine MRI and the consultant said it was perfectly clear with no issues, so that is one thing less for me to worry about.

Yes, I think anxiety is not helping at this point. I hope I don't need another MRI scan it isn't a pleasant experience.

However I have a long wait ahead before I get to speak to any doctor.

1. I have started wearing my fitbit band again with 2 hourly alarms set on it. Every time it vibrates I will drink a glass of water and go to the toilet.Currently wearing thick pads to catch the wee leaks.:(

1. I will buy a better walking stick and a bath mat. Maybe a grab bar for the bath, I am really struggling with stepping into the bath to get a shower. So only showering every few days :(

1. Keep a diary of symptoms for when I finally get to see the neurologist which is hopefully less than the 6 months timeline I have been given.

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.

I can cope in the house and have a washing machine for all the accident related clothing but hopefully by timing my liquid intake and toilet visits, this should be reduced a lot.

Last thing I need to sort is our food supply I am vulnerable to the virus but not in the shielding category. However I am also buying shopping for my shielding parents
Therefore I am shopping for 8 people weekly.

I was up to yesterday an Asda Delivery pass holder with a regular Tuesday slot and I still have two more slots paid for for the next two weeks.

However yesterday Asda sent me two emails at 3.14am and 3.16am in the morning. One saying my delivery pass was up for renewal and the second a minute later canceling my pass permanently and cancelling my delivery slot going forward :(
I tried using the link in the first email to renew my pass. But due to the current crisis they aren't doing that atm.

I tried to ring loads of Asda numbers but noone is answering. I can't drive because of my legs and I would struggle to walk around a big shop at the moment and the trolley full of 8 peoples food is far too heavy for me too push.

Any suggestions on getting though to Asda ?

Worse case I will send DH, but the poor man is working many hours for a frontline service from home, cooking for the family every night and caring for me and driving me to hospital and back repeatedly, cleaning the house etc, as I am really struggling. He doesn't need another job !

If I could get another delivery slot that would help us so much.

Then I hucker down to wait for hopefully not too long :(

Bought suction grab handle and bath mat, feel like these are for old people not middle aged people like me :(

I can't bring myself to buy a proper walking stick, it just seems like I will never get better if I buy things like that. I am not leaving the house at the moment anyway, I have 'saved for later' the stick. I need to get my head around that. Plus I still have a hiking walking stick in the house, which I use when I have too.

This is very frustrating for you. I agree with others that a brain MRI is next but it is good that TM and tumours didn't show up.
I originally had a partial spinal MRI which did show lesions and once I had seen the neurologist I had to go for a spine and head MRI which he used to diagnose MS. I didn't need a lumbar puncture.

I had also a sensation of cold water trickling in my head. As soon as I told my GP I was admitted to neurology ward for further testing urgently. Have you had that too?

PastMyBestBeforeDate
I have resigned myself to waiting this thing out. It came in quick enough, surely in another week or so it will be gone.

I don't think the neurologist will do anything even if I still have symptoms in six months.

Last time I saw them 18 month ago (about falling over and dropping things loads) about my ankle and wrist giving way at random points. I was barely in his office for 10 minutes. He checked my reflexs and said I was fine and it was probably my thyroid levels and referred me straight back to my GP.

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)

Sigh, I just need to learn to cope and get on with things. I have 4 kids to homeschool and a house to look after. I have too much to do, I can't be broken now.

OneEndStreet No feeling of water here.
Yes, in normal times I would of been admitted by now but not atm, it is emergency and Covid only.