Fed up

Hi, I've posted a couple of times now and the support is always fantastic. To recap, I've had sensory problems since 2009 - left side of face numb, numbness in feet, but generally ok. 2 Mri's were clear and so too the LP. In october 2011 I had severe ON, treated with 5 days of IV steroids. Once again MRI was clear. Since last October the numbness in my face is worse (strangley relieved a bit by my glasses!), both my hands are numb, tingling in my mouth, dreadful taste in my mouth, tingling across my head and ringing in my ears. My legs tingle as well, like they are plugged in. My muscles twitch. And now I've started to feel really dizzy, like the ground is moving. Had an LP 4 weeks ago and my Neuro appt has been brought forward to next thursday - pleased but nervous - seems ominous to me. I saw an Infectious Disaeses person at the same time. He wrote to me last week and said its def not an infection. He said that the Neuro wanted to do more tests - what tests are there left?. It seems to leave MS and Neurosarcoidosis. Karen, is it possible to be diagnosed with MS with a negative MRI but a positive LP?

Plus I've gone back to work today after 6 months off (I'm lucky, good T&C). Everyone is being nice and supportive. But I know I'll be watched to see if I'm 'up to it' I know I'm good at my job but the doubts creep in. I can't believe how bad I've felt today, I didnt feel this bad last week.

Sorry for the moan, just feel despondant (and dizzy!) I'm terrified the neuro will have some answers and at the same time terrified he'll just say he doesn't know.


Hi Sue

It's perfectly natural to feel scared. It's a double edged sword. Wanting the answers but not wanting the answers.....possibly being told that they're not quite sure yet letdown

It's a minefield.

But on the plus side your neuro is clearly a proactive one which is a major bonus. I think there can be a small percentage of people that can have a clear mri, but Karen is definitely the lady to shed more light on that - she sure knows her stuff & has a wonderful way with words to boot thumbsup

As for work, I would imagine that after being off for six months it'd be tough for anyone when they go back. Try to make sure that you don't overdo it - it'll make you feel worse. You're good at your job and you know you're good at your job, everyone has doubts about their own abilities at times regardless of their situation - I have those moments of self doubt too. But that's all they are really. Doubts.  

Hopefully your appt on Thursday will be the one when they give you some definite answers. At least then you'll know and you can start to move forwards. Definitely mention the dizzyness to your neuro too - or if it gets any worse beforehand contact your GP.

Good luck & try to rest up in between work and everything else

Debbie xx

Hi Sue.


Yes, it's possible to be diagnosed with a negative MRI and positive LP. It's even possible to get diagnosed with both being negative. Basically, the neuro needs to believe that MS is the only remaining possibility.


About 5-10% of MSers have negative MRIs and the same goes for negative LPs. So, in theory, up to 1% of MSers can have negative both.


There are bound to be other tests that can still be done. Some blood tests are not done routinely because they are for very rare disorders. There are also genetic tests, more detailed and/or different MRI scans, blood tests for metabolic disorders, etc! The really good news is that your neuro believes you and seems determined to get to the answer, so I would think that the best thing you can do is put your faith in him/her (for now at least!).


Re work: please don't put extra pressure on yourself, and please don't overdo it. Take things nice and slow. You were good at your job 6 months ago: you're still good at it! So they are lucky to have you back - even if you are only doing half as much as you used to, that is still a heck of a lot more than the nothing they've been getting for the past 6 months!


Good luck for the appointment (let us know how it goes?).

Karen x

Hiya..just wanted to offer my support..and hope Ksaren and others have answered some questions for you..I get dizziness and nausea..vertigo..and the gp can give you something for that(antihistamines) please dont suffer in silence on that..worth getting your gp to check re an ear infection or dislodged crystals in the inner ear..sometimes they move without reason..but often after a fall or jolt to the neck or trauma..these can cause dizziness.(if ti s crystals a sinple manovre by the gp or physio can get them back where they should be).but def mention to the neuro..


Glad to hear you have been able to return to work..that is an hold your head up..and smile..dont are there and thats enough for now..pace yourself and if you need any extra support access to work can transport, equipment or even someone there who can enable you to do your job..they dont do your job but can asist you in order for you to complete your role..just a thought..


good luck with the appt..let us know how you get on..

Thankyou for replying. I really appreciate it. I'll let you know what happens on thursday.



goodluck sue ,ive private messaged you hello

take care sue