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?

So pleased to hear.

If you aren’t already doing this, my experience is you have to become your own health detective. No doctor will get to know your body and pains as well as you will do. I had/still have a book where I keep a pain diary and note down how things react to different things. And I try things out - maybe cold water will reduce your pain? Maybe a hot water bottle will? I remember using lots of blankets and duvets back in those days - I couldn’t bear socks on my feet but needed to be warm.

I have thermal bed socks under sports socks and a heated pad on them, yet I can't feel the socks at all, so just feel like I have icy blocks for feet, very weird feeling.

I started a diary but forgot to update it, I have to do it soon. Before my phone appointment next week.

Honestly you have to become your own expert. Get every symptom from the last five years on a piece of paper and ideally email it to your doctor. You have to be your own advocate. Sorry to badger you but I have been there x

I do need to get everything written down and I will.
I don't have an email address or even know which doctor is ringing me yet. I assume it will be one of the student doctors to take my history and they will report back to the consultant. I would be pleasantly surprised if it is a consultant, as I would be more likely to get feedback on to whether or not they will put me forward for more tests or not.
I can't remember everything for the past five years. Though luckily I wrote on Mumsnet (under a different) when I was having the falling issue, so I can get a few details from those posts too. I tend to name change for concerns about my health posts !

I am most of the way though typing up all my symptoms in date order and a list of meds I currently take.

It is so long :(

I am so worried about my Neurology appointment next week.

What if they say everything is normal, just carry on ?

What if they say that doesn't sound normal and I have to do more tests ?

What if the tests come back clear ?

What if the tests come back not clear ?

I am just panicking in circles. I want everything to stop, go back to normal and have an offical your fine result. But clearly something is up, everything is NOT fine, so logically I need them to put me through more tests, even though that is not what I want, it is what I need...answers. even though I already know any answer I get, is not what I want, which is a clean bill of health.

Sigh. I want to be able to stand up for 5 minutes without bracing myself against door frames and a walking stick and still worried I will fall. I want to stop forcing my legs to shuffle and be able to walk properly, walk up stairs easily. Get into the shower without grab rails. Not to have to take loads of nerve pain killers but not have painful, cold feet with invisible blocks on the soles. I want to feel my body between my bustline to my toes with no numbness.

I want to know when I need to eat, wee and poo without referring to a clock and making an educational guess as to my current need.

None of this is normal, is it ?

Wish me luck. I feel so vulnerable at this moment.

I have been there and honestly you will get better but you do need tests and help - and I am sure shedloads of steroids. Baby steps! Just focus on the appointment and making sure you say enough that the neurologist can not dismiss you. You have to ask ‘is this MS?’ ‘What could it be’ ‘how do you exclude it?’ As those are the type of questions which prevent them from dismissing you as the last guy did.

Your list will be so helpful in this, well done on writing it.

Also a good doctor should ask you what you want and your post above is a great summary.

Good luck for next week. Unfortunately for some, it can be a very long road for a diagnosis, you will undoubtedly will need further tests.

Good luck

WorkingItOutAsIGo Without support from you, I wouldn't have got around to getting my scrappy bit of paper up into legible type. Thank you so much.

At least I hopefully will be able to answer all questions.

I do need to get things like MS and Fibromyalgia ruled out. Still hoping for a small easily correct issue.

The idea of steroids does worry me but if it takes that to feel better then I will do it.

Frankly at this point I would do almost anything just to be able to walk properly again.

Part of me feels like a fraud bothering the doctors over something which is clearly not real, except my nerves/brain is telling me that my feet hurt or I am wearing socks etc.

However the GP's would have not urgently referred me, if they didn't trust that I am feeling this way.

I think the fact the other neurologist was so dismissive last time is really worrying me even though I will be talking to someone at a totally different hospital this time.

Arghh. I will print out my notes and have a clean piece of paper to write down anything they say.

Thank you YesNoYesMaybe

The good and bad news is the neurology consultant is absolutely sure this is not a neurology problem. He said the symptoms did not match up with neuropathic pain or MS.

He is asking for an MRI brain scan and some electrical tests but because my power and reflexes tests done by A&E doctor were fine and my clear spine MRI had part of my brain on it these mean that new tests will be clear.

I asked what else it could be and he said when the tests come back clear I will go back to GP care. He said they might say it is Fibromyalgia as that is the diagnose when everything else has been exhausted.

But Fibromyalgia main symptom is pain throughout the body. I only had pain in my feet now treated with nerve painkillers. And an uncomfortable pressure around my bustline. So this doesn't seem to fit.

Plus the only treatment for this is exercise, which I can't do as I can't walk properly. CBT and relaxation, how they will help numbness from bustline down, I don't know.

I am pleased that it is very unlikely to be a serious neurology issue but upset, as where does this leave me ?

I can't drive or walk or sleep well because of my permanently frozen cold feet. How long do I wait to see if it goes away on it's own.

My falling and dropping lasted 8 months. I can't take another 7 months of this. What if it never goes away and I am permanently damaged.

My DH is relieved with what the consultant said and wonders why I am not happier to have neurological issue likely ruled out.

Guess I keep on waiting for the MRI letter and electrical tests letter and wait the results and just hope things improve in the meantime.

But I feel very down. Doesn't look likely that I will get any kind of answer. How can I live like this ? How can I work like this ?

Aww, my lovely surprised me with a new computer game I have wanted to cheer me up and an a update to it too. Honestly he is so great. I love him so much. Without his help and support, I wouldn't of coped at all. I cried but happy tears.

Lovely DH...clearly, lol.

This sounds extremely like B12 deficiency to me. I know you said your level is fine, but you also say you take a multi-vitamin, which presumably has B12 in it... if you have an issue with absorbing B12, the vitamin will skew your blood result without helping your symptoms. Lab ranges for B12 are also too low for most cases, so deficiencies get missed all the time

Your symptoms are very very alike what I had and it was 10 years before I was diagnosed and given B12 injections. I had to diagnose myself, and then fight for enough treatment. It was missed by many doctors, including a Neurologist. It causes the same issues as MS

Please consider having a look at this site and reading through all the sections

www.b12deficiency.info/home

I only started taking multi vitamins after my blood test in Jan 2020 showed I was low in Vit D and folate. GP prescribed Vit D & Folate and asked me to start taking multivitamin to keep my levels up and my B12 was fine at that blood test.

However when these neurology tests come back, I will ask about B12 supplements. They don't do injections at our surgery but they have given me a course of pills for B12 in the past. I will ask for another course and see if my symptoms improve. It is worth a try.

I didn't take any vitamins and my deficiency was still missed for over a decade. Oral supplements won't help neurological symptoms unfortunately, it would take injections and lots of them. That's really worrying that your surgery aren't giving any!

The surgery said tablets were just as good as injections and that is why they didn't offer injections.

I will definitely push for b12 injections, as a trial to see if my symptoms improve.

Jarrow's vitamin B12 5000mcg sublingual tablets are the ones I take, although I'm sure there are other good brands. Let it dissolve under your tongue. I had a bunch of unexplained seemingly neuro issues a few years ago and after all the tests to rule out serious problems, I started taking these and they made a massive difference. Methylcobalamin is the type of B12 that's absorbable. Cyanocobalamin won't help nearly as much. There's no harm giving it a go, it's a water soluable vitamin, you can't overdose.

Couldn't find the ones you mentioned, will these do the same job ?
www.amazon.co.uk/Natural-Factors-Methylcobalamin-5000mcg-Sublingual/dp/B001ECXHZI/ref=mp_s_a_1_5?dchild=1&keywords=Jarrow%27s+vitamin+B12+5000mcg+sublingual+tablets&tag=mumsnetforu03-21&qid=1589812235&sr=8-5

Yes those should do exactly the same thing. Hope they work for you!

Persevere with them when you get them, took about 4 weeks for me to begin to notice improvement, but when I did it was such a massive relief.

Worth a try :)

Don't despair.
A relative had similar symptoms and was diagnosed with functional neurological disorder. She was very upset with this diagnosis as interpreted it as being told it was fake however it is more that your brain gets in a pickle for some unknown reason. She had some counseling to address some issues in her past and started a slow gentle exercise regime and got fully better eventually. Took about a year.

EmergencyPractitioner Who diagnosed her with that ? A GP or a consultant ?

My GP is convinced it is a neuro problem and the neurologist is sure it isn't.
I am stuck in the middle !

Any how MRI brain scan tomorrow, should get the all clear on that Thursday. Still waiting to hear from the Electrical team for their appointment.