Fed up - undiagnosed at the moment

New diagnosis and before diagnosis
1

Hi everyone

I’m new here - nice to meet you! Looking back Ive had lots of odd things over the past few years and I’m still unsure if they’re all related or not. Things like walking and my legs just losing all feeling - lasts for about 30 seconds and then I can walk again. Other things were an unexplained bad back to the point of being unable to move. And then it just mended overnight. Also my right hand has been getting weaker and Ive been unable to straighten my fingers for a long time. A few months ago I also had neuralgia in my face, I was prescribed tegratol for that - but that was such severe pain.

Last week I began getting severe pins and needles down one side which then spread to pretty much my entire body. I went to my doctor who did bloods but then 3 days later the pins and needles were getting worse and my right hand went numb and just seized up like a claw. I phoned 111 who told me to go to A&E and 5 days later I’m still on a ward under the neuro team but randomly also being looked after on an oncology ward.

I’m not in pain as such, though my right hand and arm was very sore from being seized in the same position for so long.

im hoping to get my MRI today. Lots of things have been mentioned from MS to suffering with stress (though I don’t feel stressed) and FND. We won’t really know until MRI. Since yesterday, my right hand has sort of eased off and it’s as good as it was before the total numbness but now my fingers in my left are slowly going numb. Pins and needles still in my legs though not as bad.

I’ve also been put on 10mg of amatryptiline which is making a difference.

i asked the doctor what happens if the MRI comes back normal and Ive been told I’d still see the neurologist as an outpatient but I’m concerned as to what I tell work. I’m a teacher and had to leave at 3 on Monday to go to A&E. I don’t think anyone enjoys being off work but if I have no diagnosis then what on earth do I tell them? Also not sure if I’m well enough for work next week and don’t know if I should ask for a sick note.

for those of you with a diagnosis, does my experience sound similar or could it be something completely different? I’m going mad in hospital not knowing what’s wrong!

Rachel

2

Hi Rachel

What a scary place to be, both physically and emotionally.

It’s impossible for someone on here to do any more than offer you some moral support. You are in the right place, and the doctors are doing all the tests necessary.

Many people have MS type symptoms but don’t have it, and others have something happen out of the blue and then are diagnoses.

By now you’ve had your MRI, and possibly the results. So it’s pointless me going into detail about the whatifs.

Let us know what happens.

Sue

3

hi rachel

you need to be patient, not the normal patience but the patience of a saint!

you could tell your Head Teacher that you are having investigations done for a neurological problem.

but only if you want to tell them.

get a sick note until you feel well enough to go back to work.

i hope things start moving for you.

carole x