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

There is certainly something you can do:

Watch this video:

https://www.youtube.com/watch?v=BvEizypoyO0

If your doctors won't test you, then take the B12 orally....
5mg each morning on an empty stomach. Methylcobalamin is best but you can try cyano if you can't find methyl.

There is no toxicity for this, shots are not necessary, and if you do this for 3 months you may find that you improve. But it would be best to know your B12 level first to verify your response.

Some people have to go to up to 20 doctors to get a proper diagnosis of this. The video shows that well. This video was made by a nurse and her doctor husband.

Alex, I can tell you that by simply having a clear MRI does not rule out something such as Multiple Sclerosis. You can have a clear MRI but you can still have Multiple Sclerosis. It makes getting diagnosed more difficult but not impossible.

At the time of my diagnosis the MRI was clear.

Hang in there and have patience.

Alex,
With the NHS you have the choice to go to any Hospital you choose, at any Trust. If you feel you are being given sub-par treatment by anyone call that Hospital, or NHS111 (this is for UK), and ask to speak to the PALS (Patient Advice and Liason) Office. You can talk through your concerns, or put in a formal complaint.
Don't let your age put you off, and don't stop fighting for an answer to the cause of your condition. Above all, don't get depressed - come here and rage against an unjust World - there is always someone to listen.
Don't forget to get your bloods and B12 levels checked as MrsD advises.

Dave.

ill find out what my b12 is. does it get tested when you have a blood test done.
I had a low level d , but I take calcium with added vit D and b12 already.
I have a normal diet , fish or meat with either veg and green beans , sweet potato, or salad.
ill phone the doc and see what the b12 is on monday

okay ill have a phone call with pals on Monday. I don't really no where would be best. my neurologist sent me to London thinking they would sort me out there but they don't seem interested.
I had the mri done yday so ill see what that says but if theres nothing on there then they wont do any other tests/
oh and I did have a electric muscle test but that was also normal

The amount of D in a calcium tablet is very small.

You need 1000IU for every 10 pts to raise. If you know your result from that test, you can figure it out. Use only D3. Say your level is 20, then you would use 3000IU to get to the goal of 50.

The B12 has be taken on an empty stomach. 1000mcg (1mg) minimum will be absorbed to the tune of 13mcg. Anything less than 1000mcg dose is not very useful to raise it.

And no, the B12 test is ordered separately by most labs. It is not included in a chem panel.

If you are low, and you delay too long, you may not regain the functions you lost or are losing. (this is called combined degeneration of the spinal cord).

Hi Alex,

I am so sorry to hear what you are going through! Kind of shocking to me that your work-up isn't being fast tracked. Sudden loss of limb use is usually considered an emergency. I agree with the lumbar puncture question. You definitely need every possibility explored, infectious included. If it's possible to switch doctors then do! Don't accept someone who is going to blow you off, that is a set up for failure and frustration.

I know this is hard but you must find a way to get through. Don't give up on yourself. I spent months not knowing if I would ever walk again (I did by the way) dragging myself backwards on my arms to the bathroom and hoisted up onto the toilet from the floor. Crab "walked" backwards on my arms up the stairs too. It was a serious drag, literally, but I developed some astounding triceps during that time! Try to hold on, you never know what each day will bring and one of them will bring an opportunity for healing. Do whatever you can to keep your strength. I spent a lot of time in the pool when I was not able to do anything else and it really helped with aches, pains and maintaining some muscle. I used a buoyancy belt since I couldn't really kick. If there's some kind of community pool you can get to even just a couple times a week it will give you a goal to focus on and place to feel you are accomplishing something.

Hang on Alex! We are all rooting for you and I am Sending Healing Love, :hug:
Littlepaw