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?

I'm glad they found out what the problem is, I hope things improve for you

Thank you. I hope you are right.

That's good that they've identified what it is but not so good that it's not got much treatment.
Is it worth asking to be referred to neurophysio to see if they can help with ways to get you mobile. Or exercises to strengthen you?

Yes, exercise ideas would be great. I will ask that at the hospital.

I use run then fast walk then slow walk on the treadmill. Now I can't do anything on the treadmill. I currently do 30 minutes on my seated exercise bike at the lowest level and that is hard for me. I hope to do a higher level soon. (20 levels in total and I am at 1)

The hospital have decided to swap a one off three days of steroids next week for a day of steroids every week for 6 weeks.

They told me I can't drive because of my legs numbness, which I do accept. :(

My DH has already arranged for the three days off next week in order to take me.

But DH doesn't have enough holidays to take me and wait 6 times aka 6 days off. If I am lucky and he can cancel his holiday booked for next week then he might be able to cover the first three days.

I can't ask my parents to help as they are shielding. All my friends are working themselves or have young kids or don't have a car.

I might be able to access hospital transport but that involves been 4 people to a car and waiting all day for everyone to finish appointments. Which as I will be immune suppressed is not a good idea plus I will be increasing the chance of picking up the virus. Plus that leaves my husband parenting four kids all day instead of working.

My biggest concern is why did the doctor change a one off 3 days iv of steroids to once a week steroids. He made such a big deal of I had to have three days together of treatment in order to stop the damage in my body. Do I have to wait three weeks before the steroids will work ? I need my arms not to get further damaged.

And lastly we have to cancel our small break due to these dates. Only a few nights at our mil caravan, when her park opens but it would of been fun. We will have to do it next year, if we can. In the big scales of things, this isn't the biggest point I know but I was really looking forward to leaving this house.

I just wanted to be taken to the door every day next week for three days have the treatment and then to be able to forget about it for 5 weeks. This way I will always have a hospital date looming.

Sigh.

Right hospital transport is only for cancer and dialysis patients. I will ring taxis and get a price

£35 to £38 each way....so £70 to £76 per week. It is not doable. :(

Have to have a think but I am genuinely running out of ideas here.

Public transport is ,a walk, a bus,a walk, a train, a walk, a second bus, a walk. Will take at least 2 hours each way. Likely to cost approximately the same as a taxi.

Plus I can barely hobble from my door step to our car, I simply could not make it to the nearest bus stop.

Does anyone know if this will just be 6 weeks or is it going to be every week going forward.

Panic over. I rang the lady who had booked me in and she told me that hospital transport cannot refuse to help me get to hospital as 1. I can't walk and 2. My treatment is classed essential.

My DH can get me in next week. Then I am to ask the receptionist to ring patient transport on my behalf and get them to be booked in for any appointments my DH can't cover.

I am just use pre-April of going where I wanted, when I wanted in my car. I have no independence anymore between my legs and no driving. I will be stuck in this house until I get better...I have to get better.

The only person who can tell you this is your doctor, I’d ask why they have changed the plan and what the longer term impacts of that is. If you are just having steroid injections Instead of the IV your husband may be able to take a few hours leave then head back to work.

So glad you have a diagnosis even if the treatment options are limited...I found the lack of explanation for my symptoms difficult.

For transport can you ask about hospital volunteers....I keep reading that thousands of people signed up to help out during covid but few were actually used. Local facebook groups or similar might also be worth a look, or reaching out to local churches.

You have aright to have it explained to you why the decision has been changed over your steroid treatment. Request a call back for a discussion.

My consultant wants to see me while/after my first iv drip, so I can ask about the long term plan then.

Apparently the hospital transport service has laid off their non nhs volunteers because of Covid and they can't ask unchecked volunteers to do it instead.

To be honest I have to do anything that will/might stop the damage to nerves.

I am overreacting as I don't like change, that I really struggling losing my driving privileges, plus this is putting so much more pressure on my husband.

And I have a lipbiosy and CT scans for cancer screening (precautionary) and a breast examination to fit in at some point.

How do other people manage ?

With lots of appointment I mean.

Randomness12 It is still iv steroids just weekly for 6 weeks. Then I might keep going weekly or swap to steroid pills at home.

If it wasn't for Covid I would ask my parents to drop me off and get my DH fo pick me up (as a lunch break and it should be around lunch time too) but they need to shield.

I have just caught up with this. I am so sorry to hear you have a confirmed diagnosis but so pleased they have found something they can treat and hopefully get you better. Steroids are amazingly powerful and I really hope they make a difference.

Am also so sorry the treatment is so difficult to access and made so much harder by Covid. Does your council have a helping service? I know ours does.

I am worried about taking steroids, the consultant said I might get sad or angry.

I am so use to being able to travel where I like, by driving my car. Now I can't drive it is going to be difficult getting anywhere. But again I will have to get use to that.

We will sort it out somehow, I don't think the council will help us, we are a working family, not on benefits. But if we get desperate I will certain try them.

Occupational therapy will help. DH is working and the only benefit I get is Pip, but they still put in extra bannister rails, a bath handgrip, and gave me an electric bath chair, that rises up and down, so I don't have to step over the edge of the bath. I also recently got a perching chair from them, to enable me to sit/perch at the sink, because I can't stand for long.

It's worth contacting adult social services or your GP to ask for a referral to them. You've got nothing to lose by doing so. I understand you're in a state of denial at the moment, and hoping you'll be back to your old self in a few months, it's all part of grieving your old self, but you will find these things useful.

I wish you all the best.

Motoko
Yoh are right, I haven't got my head around this. My two closest friends have said I need to contact x and y and z.

Loads of helpful advice but I keep thinking but these things are for disabled people not for me. :(

I know that whilst I do understand that the treatment is meant mainly too stop future damage and a little improvement might happen (10 to 20%).

I keep thinking well maybe I will be lucky and this will all go away with the steroids.

But the tips of my fingers feel strange today and my right thumb is getting numb at the tip, I am going to lose use of my hands without this treatment, it has to work, it just has too.

Re the steroids: I felt amazing on them!!

WorkingItOutAsIGo Really ! I hope I feel that way too.

Have you considered looking into claiming PIP? It isn't means tested.