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 couldn't read all your posts, but think I managed since your diagnosis, just a couple of things that may help.

You are eligible for Access to Work, so you'd get taxi to/from work paid for, and adaptations at work.

Have you seen the portable metal ramp s? They could be a good cheap alternative.

Had your social worker discussed direct payments with you?

And 2 more I can't remember, sorry.

Also, I have 2 extremely rare unconnected conditions. I'm not going to name or discuss publiically but happy to private chat with you. I'm also housebound but live alone. If it weren't for direct payments I wouldn't see anyone for months. It's bloody shot isn't it? I went from bei g one of a few small handful of females in my fascinating career to losing my job, driving licence and independence in a day, I have huge empathy for your situation. Take care. Oh, I can be slow to respond.

As your condition is autoimmune, you may find it improves (or at least doesn't get worse) if you don't eat animal products, which may trigger autoimmune disease via molecular mimicry and other mechanisms.

And vitamin K2 might not hurt either (that's not one they would test for in terms of deficiencies).

[quote Dizzywizz]@mrpumblechook thanks for that, I have neuropathic pain from ms and have signed up[/quote]
Glad to be of help.

Feeling very off colour atm. I hope I am not getting sick on top of everything else.
I will respond to the last few posters tomorrow.

rosiejaune
My condition is neurological but the consultant thinks a yet to be discovered autoimmune condition might have trigger it.

But I do have other autoimmune conditions anyway, so I found your post interesting. I rarely eat meat, maybe once a week and I would quite happily skip that once.

I am getting weekly blood tests including a full blood count atm, so I will keep an eye on my vitamin K levels but I was fine in March and I take a good multi vitamin tablet every day.

P0lO I will PM later this week, I am trying to get my desperately abandoned to do list done today.

Though I did manage to direct the children and do a bit of housework this morning myself so we found part of the kitchen and the living room. Going to do a little bit more tomorrow. I can't do some stuff, bending over makes me dizzy and unbalanced !

I woke up feeling much better and now I feel awful again. Like a dull pain in my stomach.

I have decided that this might be due to necking my pills too quickly and resulting in trapped wind.
As I am taking 28 pills a day atm, so a lot too take !

I will make an effort to take them slowly and if I have the same awful feeling I might have to look to one of my new meds.

I am so forgetful. It is heartburn !

The consultant asked me if I got heartburn and I said no. He then said if I developed it, I must ring my doctor and get the right stuff prescribed don't buy something over the counter.

So I rang the doctor's receptionist and said the above and asked if a GP could send a prescription electronically to my pharmacist. Let's hope they decide to do it in the message or I have to wait two days for a telephone appointment !

Oh well, I can deal with it, now I remember what it was. :)

My doctor has prescribed another drug in light of me being on some strong meds and I need to be on them for the next 5 years (short term he said then 5 years)

So now I have to move my Thyroid meds 4 hours away from the new one and I get to refill all my pill boxes...joy.

Actually if I can sleep tonight it is worth it.

[quote mrpumblechook]Sativex is only licensed for spasticity in MS and not neuropathic pain (in MS or any condition). If you wanted to try medical cannabis for neuropathic pain you may be interested ProjectTwenty21 drugscience.org.uk/project-twenty21/[/quote]
I have just registered on the link you provided, thank you2

GPs rang me yesterday apparently my latest blood test showed that my potassium is low, so they sent me the fowlest tasting medication which I have to choke down in water twice a day for a week.

Dvla forms arrived and filled out ready to go to the post office on Monday.

I also spoke to the nearest DVLA assessment centres and for £50 I can self refer and get an appointment in 3 weeks so we are doing that. Then I can send their report to DVLA without waiting for them to send me for the assessment IYSWIM.

I will also need to get to the optician just to check my glasses are ok for me before the assessment.

Lastly I have a date for the CT abdominal scan, the last cancer scan. It is the first day back to school for the kids and I have contrast to drink several times before the appointment. Not looking forward to that but frankly I doubt it could taste worse than the potassium in water. So I will cope.

Roll on a few weeks when hopefully my power chair will be here (please let it arrive in one piece and be right for me) and the blood tests and scans and doctors visits should reduce in number.

Next job try and sort out the bare minimum that the kids need to return to school and get it ordered asap. I have left it rather late but in my defence I have been on and off busy and very distracted recently.

Now off to play subsistence on my computer. I like it as it involves wandering through the forest cutting logs and picking plants, less keen on the wolves and bears that kill me, but still enjoy playing it. After 2 weeks all I can say, is that I am less rubbish at playing this game but as it is the closest I will get to a forest walk in the near future I still enjoy it :)

You might not need a driving assessment, they may be able to assess you based on medical reports and existing information.
I have a legally reportable condition and I just send off the info and waited. I have a 3 year medical licence. :)

Haenow
Yes, you are right not all conditions need assessment. I told DVLA about my sleep apnoea and they were happy for me to continue driving based on that consultants letter.

However as I am currently numb from just below down to my toes (which are completely numb now) Plus I lose track of my legs unless I am looking at them, therefore I can not safely drive a standard manual or even an automatic and I do need assessment.

Plus my consultant told me he is going to tell DVLA that I need an assessment for hand adaptions.

The only difference is that by paying for my assessment now, it will speed up the process. I hope.

"Just below my bust'

DH and I are going on a date at the weekend to the cinema and I will be wearing a new dress with matching petticoat and everything. I have decided that as people are staring at me in this manual chair anyway. I might as well buy and wear the bright colours I have always loved but never bought because I was worried people would judge me, how silly of me :)

Never thought I would be so excited about a cinema outing. Just 5 months inside my home (bar hospital visits) and a trip outside seems so daring !

Look at Georgina Grogan on Instagram, she uses a power chair & wears some lovely clothes. If you look around on Instagram, many clothing brands are using disabled models in wheelchairs to promote products, don't be ashamed, show it off. I have a friend who lost a leg & uses a power chair, hers is bright purple with silver stars.

Just think you can wear skyscraper heels & your feet won't ache, look at the advantages.

That’d be great if you can get an adapted car. Enjoy the cinema!! It’ll be lovely to get out.

Thanks Nat6999, Thank you, I have looked up Georgina Grogan. She is such a sassy confident lady. Bigger like me. Hopefully some of her style might pass my way :)

Heels !!! Not for everyday. I prefer flats. However it is my brothers wedding next year and I will need posh shoes for that. Maybe I will have a look.

ThickFast It would be my dream come true to get a reliable mobility car but I have to wait and see if I meet the criteria. Everything crossed for my telephone assessment (date to e confirmed)

I have a tracking number the power chair is on its way !

I rang DHL and managed to confirm that the UK Duty Tariff number, my blue badge number and my mobile number are all on the DHL account and on the packing label. Let this be enough for the chair to cross customs quickly and if it does, it will be here on Tuesday !

I really hope it is exactly what it says it is and that I love it, I don't want this to be an expensive mistake. I feel strange being happy that this chair is on its way. Nut it is the freedom t will give me. Not as good as working legs but a hell of a lot better than I currently am mobility wise.

I have ordered my nice crutches to be carried with my wheelchair, in case I need to get out of it for a few steps and when I am feeling particularly wobbly in the house.

Plus I have ordered some continence pants only one pair so far at £10 and pads to try. Sigh. I need something better than my current period pads. But I am trying to see this as the way I can enjoy a day out with my family and only having to carry one change plus pads. Whereas two accidents in a day would of sent me home. Just for days out of the house.

I have a form to get the assessment done of my driving. Need to book in the opticians first and then this.

The parcels have started to descend, I am giving it a couple of days to get their bedrooms a bit tidier. I will supervise and they will do it. Then the school clothes can go straight in their wardrobe etc.

Loads to do, but I find I am getting very tired these days. Hoping it is just all the medical stuff and hopefully it will get better soon. Probably not helped by having to take pills at 8am all the way to 10pm, so I can't catch up on sleep.

Oh and I also got a nice wheelchair bag with two crutches holder which I like and a clip on parasol/umbrella to go in it :)

There is nothing stopping you looking on the Motability website at what cars are available so you can have an idea of what you would like if you get your enhanced PIP, then Google reviews to look at how they look & extra features they have, with Covid & Brexit you may find that some will take extra time to be delivered so if you have a good idea of a shortlist beforehand you can get one ordered quickly should you get your award.

@Worrysaboutalot if you are struggling with some pills/ tablets flavour / texture etc, the pharmacists can make you ‘a special’ - different formulation of the medicine or different flavour, that sort of a thing (think chocolate flavoured calpol or effervescent stuff). They are made as one-offs or in very small batches and cost (not you, obvs) accordingly but can make a lot of difference to patients.
More info here apsm-uk.com/what-are-specials.php

Tini17 Thank you, that is so helpful. I will note that link in case I need it for one of my longer term pills.

The one I am struggling with at the moment is only a weeks worth but if I have to take it again, it is good to know there are other solutions.