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Original poster

Positive neurology stories needed if you please.

29 replies

onlyjoking9329 · 11/12/2010 13:43

I've been struggling for a while with what I first thought was a trapped nerve, (have history of back ops and nerve damage)
Over the last week it has got much much worse, I have major whole body spasms ( except my right arm)
If I touch anywhere on the left side of my body it brings on the spasms, I can't put my left foot flat to the floor cos of the pain and spasms. The spasms have been witnessed by my GP and the consultant, GP said it's looked like epilepsy but It's not as I'm totally with it throughout.
My doctor has been fab, saw her twice last week and she's phoned me three times to check how things are.
She got me an urgent appointment with the spinal surgeon which was yesterday.
Consultant says it is not a back problem or a trapped nerve, but is a neurology problem.
They've asked for full MRI scan and for me to see the neurologist, I'm very worried about this but mostly worried about my kids and who will look after them.
I'm hoping that it might be something like a bleed in the brain that they can sort out easily but my head is taking me to very scary places, does anyone have any ideas or stories that may help?
Thanks in advance.

OP posts:
noddyholder · 11/12/2010 13:50

Do you have any other symptoms apart from neuro ones?last xmas i was in a similar situation and it turned out to be b12 deficiency.i was riddled with classic symptoms esp neuro ones I had had am MRI earlier that year which showed nothing

Original poster
onlyjoking9329 · 11/12/2010 14:05

THanks that's a possibility noddy, the doctor said my liver and ESR levels were well out of range, livers probably down to the tramadol levels I'm on, ESR could be many things.
I've been having trouble with my eyes, I wear glasses but yet things don't look right, had eye test and new glasses 5 months ago. I'm getting more forgetful but I've put that down to having had a lot of stress over the last few years.
I will mention the B12 to the doctor, if it is that it's easy fixable and I can stop worrying about parkinsons MS and brain tumours.
How are you now noddy and what treatment did you have?

OP posts:
Original poster
onlyjoking9329 · 11/12/2010 15:37

I've just been googling vitamin B12 thing and most of it applies which makes me hopeful, thankyou so much noddy.

OP posts:
Milliways · 11/12/2010 16:08

Hi OJ

Last year I ran through a whole range of neuro Symptoms. Pins n Needles, burning, twitching, eye pain, terrible headaches, faitigue etc etc. My GP though MS and I was referred to a Neuro. I had 2 brain scans & a spine scan, but all clear. Eventually the symptoms died dowm & I get minor residual stuff now but I can cope with it as I know there is nothing terrible going on. (I was also tested by B12 deficiency)

I have a "Functional" nerve problem, which is surprisingly common. I have medication if needed. Think of it like Migraines or IBS - something not right but no obvious cause that shows on any scans. Whereas it is annoying not to know exactly what it is, it is not going to get worse. Stress can aggravate it.

Hope you have a similar happy outcome.

Original poster
onlyjoking9329 · 11/12/2010 16:25

Thanks millways, I will be getting GP to check for B12
I'm probably being more worried cos my Dh had MS and a brain tumour.
It's goos to hear of other things IYKWIM

OP posts:
noddyholder · 11/12/2010 21:20

Hi Oj I have been having b12 injections every 3 months.initially I had them for 3 weeks on alternate days to get my levels up.i felt nothing for about 6 months and then the weird eye things and tingly hands and nmbness eased and I didn't feel so tired.i had a weird feeling in my tongue too it was burning.I thin k it took 6 months to really kick in and I still have a numb toe which may never recover as i had it so long before treatment but lots of little niggly things have gone.

Original poster
onlyjoking9329 · 11/12/2010 22:58

That's useful to know noddy, thanks for sharing that.
Funny cos the last few weeks I've been unbelievably tired and have been sleeping loads in the day time.
I've also been to the Gps with and infected cyst and a sore tongue many times in the last few months and all those things are on the list of symptoms for vit B12 weight loss too, my GP said I'd lost a lot of weight, she's right I'm under 8 stone, size 8 jeans hang off me.

OP posts:
Original poster
onlyjoking9329 · 23/12/2010 05:53

I was admitted to hospital yesterday , they've ruled out vit b12, they've put me on the nuero ward MRI in morning.should of been yesterday but as I cantvlay on my or keep still it's a bit tricky !
Have to build up some sedative over a day, which they Have been doing today, so scan is tomorrow
Consultant wants to rule out any growths in brain and thinks propriospinal myoclonus is also a possibility, goolt is NOT my friend, I'm on a bay with 4 woman three hAve brain tumours, can't wait to get out but. The reckon I'll be eating Christmas. Pud Here!.

OP posts:
madwomanintheattic · 23/12/2010 06:09

oh, OJ. just wanted to let you know someone was reading. what a time you are having. Sad

who has got the children at the moment? can you relax about them for a day or so and try and get the tests out of the way so you are together for the 25th?

hopefully they can sedate enough to get mri done and rule out any nasties. it's so tricky if they can't do the tests, we had to wait 12 days for dd2's mri to be done as she was oxygen dependent and they didn't have the facilities. different thing entirely, but neuro stuff is always scary.

thinking of you. life is just sometimes really shitty, but then you know that. Sad

cadburysgirl · 23/12/2010 07:47

Hi OJ

Just wanted to wish you lots of luck and hope you can get this mri done so you can have christmas day with your children.

Thinking of you

GodRestYeMerryMummyLin · 23/12/2010 12:44

After all you have been through already ! i hope the scan will go well tomorrow.What a worry for you.

LIttleMissTickles · 23/12/2010 12:47

Thinking of you OJ

Ilovebaking · 23/12/2010 13:04

Thinking of you OJ - my mother had a brain tumour, first she didn't want an operation (it was 5 cm which is very big) but she had lots of side effects from the medication (got diabetes, epilepsy etc.) and ended up in a wheelchair. Then she decided to have the operation, which was a complete success, she is now totally like she used to be. Nowadays, many more people then you think have brain tumours and treatment has made massive progress.

DaftApeth · 23/12/2010 13:22

Best of luck with the scan OJ. I really hope they find something that is easily treatable.

Hopefully being in hospital now means that all the resources for tests are on tap.

I'm sure that you have had enough of hospitals during he last few years though.

X

Milliways · 23/12/2010 14:04

Thinking of you OJ.

DS had an MRI a few years back and they had to heavily sedate him as he found it far too painful to lie still for more than 3 minutes (back problem). He looked like he'd had a general anaesthetic but bounced back very quickly and was home same day.

Hope you get home soon and enjoy Christmas.

Original poster
onlyjoking9329 · 24/12/2010 09:41

Think as my DH died 2 1/2 years ago from a brain tumour it makes me a little anxious.
They took me down on weds for MRI they refused due to my severe spasms.
thurs they gave me diazepam and haloperidol but only 20 mins before, so they took me down and refused to do me.
Next step is GA for the scan but not sure that will happen until Monday . So I might get weekend leave
Grin
Toms hospital have given him carers leave until Sunday , which is very good as he doesnt live with me.
But cos my three have autism it's best they can stay in own home, lotsof mates been helping with babysitting shopping and all sorts, thanks for your kind thoughts and words, hope your Christmas is good.

OP posts:
Milliways · 24/12/2010 20:01

Merry Christmas OJ & family

CarGirl · 24/12/2010 20:13

Hope you get weekend leave asap and that Tom is having a great time with the dc!

GodRestYeMerryMummyLin · 24/12/2010 22:26

Here's hoping you have the best xmas that is posible at the moment.x

Original poster
onlyjoking9329 · 27/12/2010 00:45

I got out on Christmas eve Grin
scan results NORMAL GrinGrinGrinGrin GrinGrinGrinGrin
it's fair to say we had the best Christmas.

OP posts:
edam · 27/12/2010 00:53

Hoo-bloody-rah! So glad to hear it. But what's happened with the symptoms?

DaftApeth · 27/12/2010 09:38

OJ that is the BEST news Grin

You must be so relieved. I hope they find something simple that is causing your symptoms.

Take care. Hope you continue to enjoy the festivities

ABudafulSightWereHappyTonight · 27/12/2010 09:44

Wow OJ. I have only just seen this. What a time you are having.

Very pleased you got out for Xmas - out on good behaviour! And glad your scan was normal.

GodRestYeMerryMummyLin · 27/12/2010 10:38

oh i am glad to read that OJ.Will they now do different tests to find the cause of your symptoms ?

cadburysgirl · 28/12/2010 02:01

Glad to hear you are out OJ and that you had a good Xmas.

What happens now re your symptoms?

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