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?

@Rubbleonthedouble1

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

Thank you. I hope you got treatment and help

LakieLady I did a long reply to you but I seem to have deleted it, oops.
It basically said I hope not to need more help, as I hope these new doctor's will treat me.

Obviously if it is going to be more medium or long term, I would need to get some help to allow me to leave my house at some point.

But I have all my hope resting with the doctors atm.

Knowledge is power so I’m glad you’re getting investigations in a timely fashion. I’ve also had the nerve conduction test you describe and similar to you I felt pretty beat up afterwards. I’m so glad they are seeing you again ASAP — I’m sure they’ll be able to find some help for you xx

I think I checked a while ago and private MRI is £2000?

@pinktaxi

I think I checked a while ago and private MRI is £2000?

Thankfully I ended up getting MRI on the NHS. Both the spine and the brain scans came back clear. I am very grateful for the good results which rule out loads of serious problems.

@FloutMyArse

Knowledge is power so I’m glad you’re getting investigations in a timely fashion. I’ve also had the nerve conduction test you describe and similar to you I felt pretty beat up afterwards. I’m so glad they are seeing you again ASAP — I’m sure they’ll be able to find some help for you xx

Glad, you had a similar experience on the nerve test and being beat up for hours afterwards. Makes me feel less like a wimp.

I need to stay away from Google as I keep trying to look for what is the matter with me. But I need to leave that to the experts next week, rather than pre fill my head with worry, when it might be easy simple and fixable.

Unfortunately mine was MS which they easily saw on my MRI. X

I am sorry you are going through this. I had nerve problems, although not as severe as you, severe enough to be diagnosed as developing Fibromaygia. But I just saw a chiropractor who feels my nerve issues are because my spine is out and after one session I can see things improving. Hope you are ok.

Same, RubbleontheDouble :( but at least being diagnosed was a relief because I finally got on a very good treatment protocol. I was not surprised by my diagnosis, as my symptoms were classic RRMS.

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.

You'll need to wait 6 months to do this and the condition must be expected to continue for at least a further 6 months.

FloutMyArse & RubbleontheDouble
Hope you have loads of good days.

ittakes2
Thank you, yes I am OK. Trying and failing not to google things. Never a good thing to do. I need to be patient and wait until next week and see what the doctors say

Jingstohang yes, you are right. Here's hoping I am all cured far ahead of the 6 month point !

Thanks for your kindness - yes, now that I’m on a treatment program things have been soooo much better. I hope they find some way to help you too! You’re in my thoughts xx

FloutMyArse I am glad to be in your thoughts, I need all the good will I can get.

I really hope this consultant can help me next week. Everything crossed.

Thank you. Yes thanks to treatment I’m having I’m getting more good days :)
I knew mine was MS but was ignored for years.
I’ll be thinking of you x

Rubbleonthedouble1 Thanks

Yes, only MRI scans for emergencies.

Being numb from the waist down with no bladder urgency and leaking is not an emergency.

If I develop pain and start retaining my wee, I am too go back to hospital. But clearly that is not my problems.

You are kidding me, I've had neuropathy for years, I have severe spinal problems and my GP sent me for an MRI scan immediately although I don't have bowel and bladder problems I can't feel my feet and my balance is poor.
I've had referrals to orthopaedics, pain clinic, you name it I've had it.
Is there some kind of countrywide rationing of MRI's in some areas? It sounds appalling.

madcatladyforever It was reduced service due to Corona and they did do the MRI a few days/weeks later.

Tbh I was a bit miffed at the time but valued being a non emergency too.

Now I am seeing a neurologist at another hospital, hoping to get some answers next week.

@WorrysaboutalotHas a parkinsonism disease been suggested as a cause?

I think my nerve conduct test would rule that out, as my motor nerves are fine.

Long story short

I have been diagnosed with dorsal root ganglionopathy, which is very rare. They see 4 people over last 6 years with this.

I am going to be getting 3 days of iv steroids to suppress my immune system to stop it further damaging me.

They can't cure me but they are very hopeful of stopping further damage from being done to me, I might see a 10 to 20% improvement from my current position.

I don't know what to think at this point, hope the steroids work I guess.

Oh I'm so sorry op ☹️

At least you will get some improvement? It won't get worse? That's something.

Hope you are soon on the way to recovery

Yes, they are really hoping to stop further damage, I hope I get more improvement than they said. I want to walk properly again.