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?

They were diagnosed after tests ( normal) by an neurologist in Southampton.

Here is a good website by Prof Jon Stone a neurologist in Edinburgh who has a special interest in it.

www.neurosymptoms.org/welcome/4594357992

An expensive book which I got following her diagnosis

www.amazon.co.uk/Overcoming-Functional-Neurological-Symptoms-Approach/dp/1444138340/ref=nodl_

Many HCPs have not come across FND and neurologists have to take a long consultation time to explain it so often don't make that diagnosis preferring to say that there is nothing obvious wrong so go back to GP

Thanks for the recommendations, is I get told that I will buy one.

Just back from brain MRI scan. I was so still they thought I fell asleep. I said no, I am just not keen on small spaces, so was staying as still as possible to avoid messing up the scan.

The consultant already saw part of my brain scan on my spine scan last week. So it is 99.9% likely to come back clear. Just checking to be though.

Now awaiting electrical tests, which I think might be the nerve impulse test the GP mentioned. But I haven't got a date for them yet.

I chased the electric test and it turns out it is an 'nerve conduct study' I am in the emergency list and will be called as soon as they have a slot for me, but not until Friday at the earliest, when the doctor is back. So hopefully in the next week or so.

Still no results for the brain scan yet, even though I know it will be clear, I still want to have that confirmed.

Had to order more pain pills to keep me going.

Glad you are keeping okay. Why are you convinced the scan will be clear ? How's the moving going ?

This neurologist saw my spine scan and part of my brain was on it. He said from what he saw I would have a clear brain scan but would do a full brain scan just to be through.

Everything is the same for me. :(

Still numb from bustline down. I struggled to walk especially on the stairs. Still no feelings from my stomach, bladder or bowel. However I had learnt I break wind a few times before a poo and I use the clock for regular toilet visits otherwise.

To be honest I am trying to accept this as my new normal. Just managed to tidy the bathroom but the bending has left my legs shaky, so I am sat on my bed until they feel strong enough to tackle the stairs.

I have started doing 30 minutes a day on my seated exercise bike to try and increase strength in my legs. The hardest part is the coordination needed to get both feet on the pedals, first one is fine but the second is quite a struggle. I think I can't lift my legs as high as usual. I am using my bike time to watch an American design and sewing programme, I find it interesting.

I will get out my not branded trx straps next week and try some arm exercises, I am painfully aware that I am getting more out of shape. But I am losing weight, as I have less interest in food, though eating enough.

Oh i really feel for you. Really hope things get better soon. Do let us know the outcome of the scan.

I will do.

You are amazing, i just thought you should be told how incredibly you're handling this, especially when it must be so scary.

AlmostAJillSandwich Thank you so much for saying that.

In one way it is ok, as due to lockdown I don't have to go anywhere and I only have to homeschool my youngest two. So it is the best time to fall apart.

I am also aware of how lucky I have been, as I have been ruled out of having most of the serious conditions posters have mentioned. Whatever is wrong with me, it could of been so much worse.

My current plan is if my nerve conduct test (tba) is clear and I am discharged back to the GP. I am hopeing to look at vitamin deficiencies more, although my numbers have been fine this year. I do lean to vitamin deficiencies in the past. Maybe the GP's will let me trial b12 injections ?

Just checking in: am so sorry there is no real improvement but am so glad you have had the scans and hope you will get the nerve test soon! Any results yet?

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

You shouldn’t be stuck in the middle. It’s the neurologist who is the expert on this. His entire career. Whereas the GP will be dealing with you alongside vomiting bugs, sore throats, depression, baby concerns etc

Yes I agree with that and so want to challenge you - you keep talking about ‘when they say there’s nothing wrong’ as if you accept they will tell you the scans are clear and then that’s it. Don’t let that happen: there is something wrong - you are suffering! Just because one scan doesn’t find it does not let the neurologist off - he or she is accountable for you until you have a diagnosis and treatment. So don’t let them hand you back to the GP: you need to be strong and insist on further tests and second opinions. That’s a very normal thing in neurology as it is a difficult field. I saw four top specialists before I got a diagnosis, and they all talked my case over at length. You may need the same. Expect them to be responsible for you and don’t let them not be.

Hi OP....I’ve followed your thread but not posted as I didn't think my experience was relevant, but now I think it may be. I have fibromyalgia and small fibre neuropathy. My symptoms are chronic pain, mostly but not exclusively in my back and intermittent numbness in my limbs. Most often my hands or feet but it can be an arm or leg as far as my glutes. It’s worse when I’m asleep because when I’m awake I can move around and stave off the numbness.

I had a nerve conduction test which came out normal but I also had a skin biopsy which showed significant abnormalities in the small nerve fibres. I also have abnormal responses to heat and cold in my hands and feet.

I take a range of pain medications, a muscle relaxant at night (Tizanidine) and have recently started on lamotrigine. I also have intravenous infusions of magnesium and B12 injections. My primary symptoms are pain...the SFN is likely secondary to the fibro. In your place I would push back on a fibro diagnosis ...it’s a “dustbin diagnosis” which means they don’t know what’s wrong and cba to test further. The standard response is CBT, physio and anti-depressants.

My fibro was diagnosed by a rheumatologist but the SFN was diagnosed by a neurologist. I really feel that the whole thing is neurological and the muscular component is a nerve related feedback loop rather than a primary muscular problem but that reflects the weird and unscientific way fibro is diagnosed. There is an apparently definitive diagnostic test but it isn’t used....fibro is associated with elevated levels of a neurotransmitter called substance P which can be detected through a lumbar puncture. Maybe worth asking them to do that if they insist on a fibro diagnosis although I’ve no idea if they would agree....

I do hear you WorkingItOutAsIGo

But as the neurologist has told me I have nothing neurologically wrong with me based on my symptoms. How can I argue with him ?

First I need to have my second test and get the results from both and see if either show anything.

If they show something then I guess it will be more tests.

If the neurologist wants to discharge me after the clear tests, I will push him as to other pathways and what it could be (as clearly the GP's have no idea) But I can't make him test me further :(

ostinato
I have the same reservation about been diagnosed with fibromyalgia. I don't think it fits my symptoms.

As the pain is only in my feet and not in my joints. I know that as my MIL has fibromyalgia.

Plus there isn't any real treatment and I want my nerve pain to be treated at the source not masked with painkillers. :(

I am getting break though pain now and I have 5 more hours before my next painkillers :(

Not having a good day today, tomorrow will be a better day.

Just to say have been thinking about you @worrysaboutalot. Sorry you don't have any answers yet and are on this horrible rollercoaster path. I hope today is a better day for you than Monday.

I was going to say B12 but I see some other people have already mentioned it. I’ve never been as severe as you thankfully, but even at ‘normal’ levels I can experience numbness, pins and needles, weakness, exhaustion, depression/anxiety etc and when I had injections I could feel the benefit within a couple of days. You can buy it yourself to inject at home - I know a few people on here do that - so if your doctor won’t prescribe the injections that doesn’t have to be an end to it. I take the sublingual tablets mentioned above, but you may not be able to absorb enough that way.

Do you have print outs of all your “normal” blood tests? Can you see anything which is borderline eg thyroid, that could be improved and pushed further into the normal band? Quite often what doctors see as “normal” is anything but for the patient, as the normal range can be quite big. B12 normal range on my last test was 300-900. At 280 I was told I wasn’t low, just borderline. But funnily enough when it’s at 800/900 I feel a lot better!

I know it’s the last thing you feel like doing, but you have to be your own advocate here and find out literally everything about every test.

Myasthenia Gravis or MS could well be possible looking at those symptoms. B12 is said to help prevent MS so keep on top of that regardless. And get as much info as you can about everything else. Sometimes tests are wrong. Sometimes the criteria for tests are wrong. Sometimes the ranges don’t reflect patient experience. Something is clearly wrong somewhere. And if nobody else is taking responsibility and just passing you back and forth, you need to gave a full overview of it all.

tortoiseandtomato Tomorrow is a much better day and I got the latest update for a computer game I play today. So that is helping to distract me nicely :)

tortoiseandtomato
The neurologist is sure that my symptoms are nothing like MS. Which is a blessing.

I do need to get skne treatment. I am finding it harder to walk and my balance is getting worse, especially if the bedroom is dark.

Yes, once I get this last neurology nerve test done (date pending). I will be checking my blood results with my GP and see what they suggest first.

But yes, I will buy my own B12 and inject it myself, if it comes to that. I can not live like this permanently, I need to get better.

Have you informed your GP of your worsening symptoms? How are you dealing with the double incontinence? I can't believe how calm you are, could you perhaps chase your blood results now rather than waiting for the nerve conduction tests? I have found that you have to nag and nag to get anywhere, I had a similar story and after 2 years I had a second opinion and now am having surgery which should have been done when the symptoms began.

Good news, my nerve conduct test will be done next week but I won't get results on the day. I will see the consultant in a face to face meeting at a later date (to be arranged) to discuss the results. Which seems a tad pointless, when he is already so sure that he is discharging me but it is probably hospital procedure. At least that will be the end of all the hospital tests and back to my local GP and get to the bottom of the blood tests.

Ps. Yes, the GP's are aware of all my symptoms and just repeat that they are all sense issues and the Neurologist will sort me out. However I will either get use to it or it will go away, so not a long term solution.

To be honest I am hanging in there, Now I time my bathroom visits, I only get small wee leaks into a pad, plus I learnt that I break small amount of wind prior to needing a poo, so I hobble as fast as I can to the toilet then. It mainly works, with a few false alarms. I find the numbness more upsetting, I hate showering, as the feeling of the water drops bouncing off my numb skin, really grates with me.

"However I will either get use to it or it will go away, so not a long term solution."

Should be the last line of my post, not in the middle. Wonder how that happened

Plus it should end with problem not solution too...I am too tired after home schooling ti write any posts at the moment.