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?

Good news I have a clear brain mri scan, thank goodness.

So I am 95% really happy that the bad diagnosis have been ruled out.
I am 5% worried that this will be one of those things 'you just have to live with' with no treatment too stop it.

I can't carry on like this, I need some proper treatment to stop the numbness and my lack of sensations from my stomach, bladder and bowel. I need my legs to work properly, not to feel numb and weak all the time.

I will be trying B12 Injections just to see if they help. But even when I DID have a B12 deficiency years ago, I never had symptoms like this, not even mild versions. Plus the GP said my B12 levels were fine.

This is ridiculous, I need to look at the bright side it isn't anything bad.

I am very pleased. But clearly you have a neurological problem they just haven’t found it, so don’t accept the neurologist discharging you. He or she needs to look further. I think B12 is a great idea too.

I have asked for copies of my last two blood test results from my doctors. They will be posted to me.

I will take them to the neurologist, as he hasn't got access to my doctors/hospital records. See if that shine a light on anything.

Just sad today. I am feeling what is the point of the EMG and NCT tests, as if my spine and brain are clear, won't these be clear too ? I am still going to get them done, just to be on the safe side.

I know I am just being super negative today, of course I do want the tests to come back clear.

But I want a treatment too....sigh.

I went for my nerve conduct test today and the nice doctor, after zapping each limb in turn. Repeated it for each limb in turn again.

Then got a needle out and tested my muscles in my right leg at the ankle and knee and the thigh. I know this is called EMG from the leaflets they sent in the post.

He says something is wrong

Doctor said my arms were sluggish and that my leg showed a possible inflammation of the peripheral nerves ?!

He is going to talk to the consultant about me and he expects I will be back in the clinic again (for further tests I assume)

Doctor said the problem is with both legs. He was interested in my balance problems, especially in the dark. He also repeated about the malabsorbtion issue I have and under active thyroid problem.

Plus very interested in how I use to fall over and drop things all the time. Including a cup of tea down myself. 18 months ago (when I was dismissed by a different neurologist)

Also talked about my lack of sensations in my stomach, bladder and bowel and numbness from the bustline down, especially numb at the front.

I am feeling sad and relieved.

Relieved that I am not making up and this doctor sounds interested in helping me.

Sad because I don't want to wait more and be poked and prodded, I just want to be well again.

I am sorry he found a problem but given your symptoms there is so clearly something wrong, so having information will really help them get to a treatment plan. Am glad the doctor today was so on the ball and helpful. Fingers crossed it’s the first step on the way to a solution xxx

Have you had any antibiotics in the months before the pain & numbness started? I have exactly the same symptoms as you but mine are only up to mid thigh & my hands, I'm waiting to see a neurologist. I have had loads of courses of antibiotics for uti's over the last 18 months, probably at least 15 lots including a 2 month low dose course, nearly always Nitrofuarantin, my feet started hurting first, then went numb which then travelled up to my knees, I had a course of Nitrofuarantin in february & my lips & hands went numb, after a lot of googling, I found that Nitrofuarantin can cause this. Look up Neurotoxicity this is the reaction that causes the numbness.

Thanks WorkingItOutAsIGo Yes, I really hope, this the first step to a solution.

Nat6999

So sorry you have had similar problems. I hope you get diagnosis/treatment very soon.

In answer to your question, no I haven't had any antibioticsfor a number of years. So in my case I don't think that is related to that particular issue.

I think this is a positive thing, knowledge is power. Whether he had told you there was a problem or not you are suffering greatly, now that suffering can be eased or managed.

I've had various issues with nerve damage across my body for the last 7 years, have been on lots of different types of pills and still no answer as to what me caused it. Like you, once MS was ruled out they didn't want to see me anymore. I'm now pregnant and suffering worse than I have in years, and an appointment with a new neurologist in April was cancelled. It's really hard, I know. I hope you finally get some answers soon and things start to improve for you. Hang in there.

Thanks Addler and congratulations on your pregnancy

I am still in discomfort and my next painkillers are at 5pm. Going to ask my DH to buy some Ibuprofen and see if that helps.

My right hand and right leg and my tail bone hurt worse. Why the tail bone, I don't know. The doctor spend ages zapping my right hand using two loops of wire on each finger. Then repeating it.

My right leg had more zaps than the left plus the needles into the muscles.

I am not sure if it is a nerve pain or a result of having low electrical currents run through me for 90 mins ! (Double the expected appointment time)

The whole test yesterday left me so worn out and out of sorts. Went to bed 10pm ish couldn't get back to sleep when I woke up at 5am.

Went downstairs to wait until I could take this morning medicine. Fell asleep on the sofa straight after and woke up at 1pm !

How can a test where I literally did nothing but chat to the nurse chaperoning the doctor and alternating with watching the doctor draw on my limbs with a green pen and measure and zap me. All of it recorded on his high tech machine.

Hopefully tomorrow I will be back to my normal self.

It is interesting that yesterday, I couldn't feel the needles in my muscles and the zaps were low voltage. I could ignore them enough at the time. But afterwards it bothers me more, lol.

Today is a better day. I had a poor night sleep with my feet but today we just have slight pain and mainly numbness.

I am wondering what is causing my peripheral nerve damage and how can the doctors stop and reverse it ?

In one sense falling to pieces in lockdown was a good choice at least I don't have to go anywhere or do anything outside the house.

I am barely shuffling short distances around the house, the stairs take so much out of me that I lie down to rest my legs, before I risk coming downstairs.

I desperately need some treatment, let their be one.

You poor thing - there will be! You are getting much closer to it.

Thank you. I hope you are right.

Ps. I do know the difference between their, there etc Just too tired to grammar check my posts today.

Just had a phone call asking me to come back to the hospital to see a specialist in neurology, in a weeks time.

My first thought was that it had been a horrible mistake and my nerve conduct test was wrong.

Then I realised 1, the doctor repeated the testing several times, it is unlikely to be wrong.
And 2, they wouldn't waste an appointment slot of one of their specialists, just to say such a thing.
And 3, that an appointment in a week is extraordinary fast for the NHS. However they are only dealing with urgent cases atm, so I won't read anything bad into that.

I still want to bury my head in the sand. To wait to get the all clear, when it is looking less likely by the day.

Sigh, Wish me luck.

I am so pleased you are getting seen so soon and really hope they have something helpful to offer!!

Thank you, so do I.

Feeling guilty for dragging DH away from work again to drive me there, but needs must.

Hoping for an easily fixable solution to my poorly nerves.

Hey OP 💐 You are doing SO well. Truly. I really hope answers and treatment are just around the next corner for you; it’s so good to hear you becoming more confident at advocating for yourself. Hang in there.

ChestnutsStealthBoasting Thank you. I am trying. I had to put a second suction grab bar up in the bathroom. This one to help me get on and off the toilet.

I can't drive, or walk for more than a few metres. This can't go on.

I need help, some treatment or at the very least some answers. I really hope Monday is the answer.

Goodness this all sounds so stressful for you. I can understand feeling exhausted after tests even if you don’t have to do anything. It’s the emotion and expectation of it all.

Just RTFT, @Worrysaboutalot and you've been amazingly resilient through what must be a really worrying time.

I'm glad that you seem to be getting some answers at last.

It might be an idea to ask social services for an occupational therapy assessment to see what they can offer in the way of equipment etc that might help you. I also think you should apply for PIP, I'm sure you'd qualify and the extra money would make it possible for you to get some help in the house, or buy stuff you need or whatever.

I’m glad you’re getting seen. I’ve been where you are and it sucks xx

ThickFast Thank you

Good luck tomorrow

@hotstepper4

Good luck tomorrow

Aww, thank you. It is next week I am seeing the doctors again :)