new and completley fed up
 

hey im new here and I don't know were this would fit

so in oct last year my left leg went numb in the space of a hour and I was reduced to not being able to walk unless I had crutches

since then iv rapidly declined and pain has shot up

I now have no feeling or use of my left leg cant move any part even if I wanted to. its risen upwards into my hip and numb there unable to use it to walk, stomach chest neck and face is all numb stopping on the midline.
then over these last few weeks my right leg has started to go numb and my spine has become extremely painful.

had mri of my spine and head that are normal, having another set done but honestly just feel that its so they can say nope nothing on there

stuck in my bed since iv got worse, even with crutches it has got near impossible to walk, mum literally has to drag me to the toilet so I can get there. cant get into the bath or upstairs to the shower. barely leave my room coz I cant face the prospect of trying to get downstairs unless theres a reason.
getting a wheelchair of the nhs but wont get any other help like a OT until the docs say iv got so and so wrong which they cant meanwhile im having to youtube instructions on how to get about with things seen as I wasn't born like this or needing to use a wheelchair

on pregab and morphine at night however that's the only time im pain free

got a neurologist app end of april as the soonest but was in a n e last week and their neurologist spoke with him and he then can to speak with me saying unless these mri show anything then im going be left as an undiagnosed neurological case.
which makes near impossible for me to get benefits properly or insurance for holiday as its undiagnosed.
and iv had to quite my job
so at 23 im going end up living a life in a wheelchair cozz theres nothing on a mri.

Welcome AlexT. :Wave-Hello:

Hello Alex,

Welcome to the NeuroTalk Support Groups.

Well, you're in a rather dire situation for any age, let alone for a 23 year old.

An end of April appointment seems too far away to me considering your situation.

Have you had a lumbar puncture test?

You didn't have a flu shot or have Influenza or any other type of viral or bacterial illness before this started?

Have the doctors in A and E or your own doc given you any ideas at all?

Nice to meet you!!
 

yeah well the doctors don't seem to care. guess need a neurologist that did.
yeah that was his first clinic app he could offer altho his secretary said he could of seen me weeks ago if she double booked but hed need to ok that but he obviously didn't ok it.
no they don't see that itll show anything.
no I was off work sick at the time coz in sep work sent me to hosp by ambulance coz they thort I had a heart attack. and the hosp were looking into my heart.
no the neurologist in a n e worked under my neurologist in London so was just like I agree with him theres nothing on ur mris so u should be fine. my doctor hasn't a clue she had me on tramadol for months before I asked to be put onto pregablin seen as it was a neuro pain killer

they are literally saying ill av to live like it
I don't even no here were I would fit in seen as it is a undiagnosed neuro condition

I give up

I am sorry to be late to this thread....

But you need to have your B12 measured. It should be at least 400pg/ml. If lower than that some doctors still call it normal and it is not.

B12 is easy to supplement yourself...if low you can lose nerve functions in the legs, arms and eyes. If ignored too long, it can be fatal.

How is your diet? are you eating animal sourced foods?

Hi AlexT and welcome to NeuroTalk.

No. Don't give up :hug:

When I was 24 years old I lost the majority of my mobility, I was numb from the waist down, a lot of pain, really bad fatigue, hand tremors, pins and needle and buzzing/vibration sensations. It took 3 months but I did end up with a diagnosis.

As difficult as it is, have faith that the Neurologist or some other Dr. will be able to explain what is going on. There is quite a bit of testing that can be done to rule in/out different causes. The MRI is a great diagnostic tool but does not always indicate the problem.

what was ur diagnosis in the end? im having to give up my job and I was one exam away from fully qualifying at work.
I think the only other way going to get help will be to choose a private neurologist and somehow do that.
I cant even get to the toilet at home without mum needing to drag me there.

Hi AlexT,

My diagnosis was/is Multiple Sclerosis.

Please keep in mind many things can cause what your experiencing and only testing and time will give you the correct diagnosis.

yeah I no but both my neurologist in local hospital and at the national neurology and neuro surgery hospital in London are just looking at saying my mris are clean and the muscle test I had was clean nothing wrong so nothing they can do