Any advice?

Hi… Does anyone have any advice for me? I’m feeling confused and frustrated. I had an MRI last September which found ‘innumerable’ white matter lesions. This was due to terrible pulsatile tinnitus ( no cause found- just told to live with it). After lots of other odd things, I was referred to neuro to look at mri. He did some basic tests and found I had lessened sensation in my lower back, abnormal plantar reflex and some ‘asymmetry’?! Over the past year, I’ve had constant pins and needles, feelings of icy cold and burning patches on my legs, very bad neck and pain in shoulders, lower back and hips. I’m taking 200 mg pregabalin to help with this ( which it does most of the time).

A month nth ago my neuro sent me for evoked potentisls and lp. Whilst on holiday last week, my right leg was so bad I had to use a stick to get about as it kept giving way. I spoke to neuro secretary this morning and she said ’ good news… Lp is clear… We’ll see you in January’.

Whilst I don’t ’ want’ Ms, I am now wondering what the hell is wrong with me! My mum has Ms, so Im not totally ignorant about it, but if my lp was clear does that mean I don’t have it? I am so sick of not knowing and feel so down not knowing what is wrong. I was not told of my evoked potentials results, but someone said these ‘don’t matter’ in diagnosis anyway?!

Sooooo confused!!!

Hi debbiemoth, you will just have to be patient, its really annoying being in Limbo. This forum has lots who are in limbo & have been for a long time You can’t hurry a neurologist (unfortunately). They like to be certain of What they are diagnosing. As far as the lp goes, my understanding is A negative lp does NOT mean you have not got ms. Keep a note of any new symptoms and how long they last etc for when you see neuro. Take care C

Thanks for this… I realise my post was probably a rant really but i really thought that after two years I was getting closer to finding out. I have calmed down a bit since!! Since I posted , my neuro has contacted me to bring my January appointment forward to this month, so hopefully he will be able to explain where he thinks we are. :slight_smile:

Hi Debbie, I know limboland is horrible & can make you very anxious, but there’s nothing that you can do except wait. MS is notoriously difficult to diagnose so your neuro will need to be very sure before he’ll say. It is good that the LP was clear, but even so your neuro will still need all test results, & probably an account from you with all your symptoms & dates, before he’ll be in a position to give a diagnosis, possibly not even then. In the time all this takes, always soooooo slow, January isn’t too much longer to wait…I know it’s hard but try to be positive about the good LP results & try not to worry, it may worsen your symptoms.

Good luck

Rosina x

Just seen your post Debbie, so maybe you’ll be sorted quite soon that’s great!

Rosina x

Great? That neuro has brought your appointment forward. Keep us updated on what he says. Did you let the secrerary know about your latest incident? Maybe thats why he wants to see you. Hopefully you will get some answers soon. Take care C

Well… Just had my next neuro appointment and now I’m really confused!! He said my evoked potentials were not normal but they were not too abnormal… Whatever that means! After talking through my last lot of scary symptoms … My right leg giving way and not being able to walk or stand independently for more than a week he said it was probably something else as I may not be as fit as I once was… True , but until a year ago I was very , very fit, practising martial arts and circuit training and I’m only in my 40s not ancient!! My leg felt dead, not like it had pulled a muscle ! So it felt like he was saying not Ms… He then said it might be but Ms never caused anyone any pain and my gp had me on pregabalin for muscle pains . He also said he had never heard of anyone having tinnitus before . So I am still in limbo land with another appointment in six months. All I know is if it is not Ms, I want to know what I’d wrong with my body but he seems totally fixated on just Ms.

There are a couple of rather rum things in there, aren’t there? A way-above-averagely fit person in her 40s has her leg do that and ‘maybe isn’t as fit as she was’. MS doesn’t cause pain. (I wish!) Pregabalin prescribed for humdrum muscular aches and pains. MS not known to cause tinnitus. As you describe it, it does all sound a bit odd. Maybe your neuro isn’t exactly a five-star communicator, or maybe some things got a bit lost in translation. Or all just a polite way of him saying ‘let’s wait and see’, which is what you are left with anyway by the sounds of it, and that is maybe not the worst thing in the world, because time is the best diagnostician.

But if you’re not happy leaving it there, talking to your GP about the pros and cons of getting a second opinion is always an option, particularly if the neuro you have been seeing is not an MS specialist and you would rather see someone who is.

Good luck.