Been refered to neurology

[marymoocow]

So I went to the doctors see previous post, and as I have put on it the doctor has refered me to neurology. He mentioned tests for MS and benign tumours. Anyone been through these (the tests i mean) and know what I should expect? He did reassure me that it could well be nothing as well.

I have MS so went through a whole bobble of tests about 10 years ago. The MRI one is fine as it the evoked visual potential and nerve conduction (just remember to shave your legs as they do that one on the leg. Much to my horror I didn't know and hadn't done my legs for ages!)
I refused the lumbar puncture though. Ouch.

Thanks for the tip! Do they not need to do a lumbar puncture? I must admit that's the one that i was worrying about. To be truthful I'm finding the whole thing quite scary at the moment. I'm putting a brave face on things for dh, as he is more scared than me, and obviously all the dc know is that mummy isn't feeling very well sometimes. I also haven't told many people in RL what is happening, as i don't want to be seen as being "ill".

Sorry rambled on for a bit there

none of the tests for MS are inconclusive so they do as many as possible. Best are MRI and clinical symptoms. You don't have to have the LP to get a diagnosis.
They will use your symptoms to decide what type of MS you have if thats what you have.
I have relapsing-remitting MS and am in and out of a wheelchair like a yo-yo.
It is scary but you do get used to it and nothing can stop you leading a full life. you just have to be aware you will be more tired/clumsy/not walky etc
Mine started with tingling in hands and feet and immense fatigue plus sometimes coming to a halt and not being able to get going again. But it wasn't till last year I actually got a powerchair (and the NHS do not supply them so start saving!)
Right now some days I walk with a stick and some days I don't. Some days my hands don't work and others they are better. Can't look up and walk though as I have no balance and stumble a fair bit. people think I'm drunk!

But you don't have to accpet anything a neuro says and do ask questions. Some of them can be complete arses.
But ask any questions you want and I'll try and answer.
I have a daughter with severe creberal palsy too so we are a two wheelchair family which is a complete bummer for transport.

thats shouldbe 'conclusive'. MS affects your eloquence too

I have also been tested for MS and did have the lumbar puncture. It was ok tbh - some people get a really bad headache afterwards, but i just felt a bit sick.

the first appointment will just be where the neurologist listens to you talk about your symptoms. He may do things like test your reflexes/look in your eyes etc. I think they rely more on the symptoms than they do the tests in order to diagnose MS, and afaik, you need to have a couple of episodes of symptoms before they will confirm MS for sure.

He will probably refer you for a MRI scan and Lumbar puncture, and I also got referred for an EEG (brain scan thingie).

I think that there is alot of things that this could be apart from MS/brain tummour, and I think that it is most likely that you will come away from your appointment, none the wiser. (I am still undiagnosed, but pregnant, and my symptoms seem to have disappeared in pregnancy).

Thanks alot for all of that. I must admit that I can tick quite a few of the boxes (so to speak) with the symptoms. The tingling has gone from my face more or less now, but my arm feels like i have been lifting weights non-stop all day - if that makes sense. I'm also very tired for no apparent reason, and keep having spaced out dizzy moments. I've got to wait 3 weeks to see the neurologist though. I think once i know what it is i will be able to deal with it better iyswim.

Its nice to know that if i need to chat that someone will be around. Thanks.

Thanks Pollyanna. Glad that your symptoms seem to have disappeared, although I don't think I will go down that route to try and get rid of them

I had similar symptoms to you about 12 years ago and went through a series of tests including a LP which was fine (only thing that stung a bit was the local anaesthetic).

Luckily it turned out to be some sort of post viral condition (a bit like an ME type thing)linked to some nasty throat infections I had had earlier that year (this was picked up by the blood tests the neurologist had done)

I still occasionally get the tingling in my face but usually when I am stressed or tired. I was told these coditions can last for years and years so it doesn't worry me anymore.

Just thought you might like to know that there are other conditions with the same symptoms that are not necesarily as worrying as MS.

Thanks smartiejake. I've sort of gone for the assuming "the worst" senario, and then take anything that they say as can't get any worse if that makes sense. I am utterly hoping that my case turns out the same as yours.

Only got experience of brain tumours, not MS. When we were in denial about DH's brain tumour (this was post-CT scan but pre-MRI scan), I scoured medical books and found a whole wealth of things it could be that matched his symptoms. It was a brain tumour but it could have been lots of other less serious things which is the point I'm trying to make. I know people who've had to be off work for months and unable to move without feelings of intense vertigo and sickness ... that was caused by a virus.

My advice is ask lots of questions (write them all down) and don't be afraid to ask for second opinions. And you can have copies of your MRI scans so you then would have the flexibility to go elsewhere if you wanted to.

Thanks wishingchair. Sorry your news wasn't any better. I like you am just trying to get all the facts, before hand, and then i hope i will be able to deal with "whatever" better. Thanks for the tip about writing everything down. I shall do that for my symptoms as well, as I know i will forget something, that might be really important. I will take dh with me too, as i am useless at remembering everything that someone says to me in that situation.

Writing down symptoms great idea - especially if they vary throughout the day.

Things are ok with DH, treatment very effective, tumour now small with no active cells. Short of it disappearing, that's all we can hope for now. They tend to recur though . He was completely symptomless until he had 9 awake seizures in a 24 hour period. His speech and right side of his body were also (temporarily) affected due to where the tumour was located.

Anything to do with the brain is incredibly frightening but they can do amazing things. Thinking of you.

Thanks for your support wishingchair. Sorry haven't seen this sooner, have felt kind of rough since last posting. Might make another appointment with the doctor.

quick update. went to see the neurologist yesterday. He seemed to think it was a viral thing, and said that i could have an MRI scan if i wanted to, to stop me worrying. Have agreed to that but have now got to wait 2 months for the appointment.
Sypmtoms disappeard for a couple of days, tingling back in face again now, and aching in the top of my arm. Oh well........

marymoocow - I have ms - diagnosed in 1999. and I'm in very good health (went for a 10-mile run this morning-type good health). However it sounds to me like you shouldn;t be worrying. a friend of mine lost all sensation in her cheek about 15 years ago. she had all the tests, and they showed up nothing. they basically said to her that the nervous system is so complicated that they can't always tell what it is that's made it go slightly wrong. and as long as it's slightly wrong there isn;t any point in worrying. my friend still can't feel a patch on her cheek. but has never developed anything else. the worst thing about it, she says, is not realising when she's smeared pasta sauce on her face. it's horrible having to wait for another 2 months but try to put it to the back of your mind. If it's any consolation when I had an MRI, I went to the GP one evening with a headache and some visual disturbance (well, I say some, but in fact I couldn't see out of one eye) she sent me right there and then to the hospital, I got appointments with the neurologist for 2 days' later and an MRI by the end of the week. I'm sure all will be ok for you.

Thanks hatwoman. Am feeling alot more positive now about it all. I have a lot of distrust of doctors not diagnosing properly, and have had to get that sorted out in my head first. Common sense tells me that they would have rushed it quicker if it had been really serious, but then.....I was in hospital a few years ago for six weeks before they decided that i was really in agony and had got appendicitis. Hopefully you can see where I am coming from.
Things aren't too bad now, still keep getting the odd tingling in face and fingers, but the severe headache is no more at the moment.

So my MRI scan is on Thursday. What should I expect to happen? Have been told it will be in a mobile unit so nowhere to change , but that is all.
Not too worried now. Still get the numbness in my face now and again, and tingling in my fingers, but not feeling as bad as I did, so hopefully the neurologist knew what he was talking about.

marymoocow - I have similar tingling problems and various other symptoms and had to see a neurologist and have a MRI scan a couple of years ago. He said I don't have ms but do have carpal tunnel and cubital tunnel syndrome which cause problems with my hand and arms. I have tingling in my face too which he thought could be to do with problems with my neck. So there are lots of less serious reasons why these things happen.

For the MRI you wont need to change - if I remember correctly you can't be wearing anything metal - but other than that you stay dressed. It takes about 20 minutes to half an hour and the main thing is to try and stay as still as possible and it can feel a bit claustrophobic in there. But they should give you some headphones so that they can check you are ok during the procedure.

hth - and hope it all goes well and you get the all clear.

Thanks for the message. Am a little worried about the claustrophobic feeling, but trying not to think about it too much. Just relieved that whatever it is/isn't will finally be sorted out (hopefully).