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You'll have heard this before...

but here goes nothing…

This is my first time here, because I’ve not actually been diagnosed. About 10yrs ago I had a very funny episode upon waking which was mostly complete muscle weakness (couldn’t even lift my head) and blindness in both eyes for just a few seconds. Nothing was ever diagnosed.Then about a year after that I had long lasting dizziness that went on for months, I was told it was an inner ear issue, but eventually had an MRI which showed two lesions in a particular pattern which I was told at the time were consistent with MS. The neuro at the time said they need more lesions or a lumbar puncture to diagnose, my symptoms went away and all was fine. A couple of years after I had widespread numbness and tingling of my legs and feet, had another MRI which neuro said was fine and basically go away and don’t bother him again. So I did. Sorry, I’m going on a bit…

Fast forward to about 9 months ago and my right foot went numb. Couldn’t feel a thing. Had the nerve conduction tests which said my peripheral nerves were fine. GP referred me to neuro as I was having other symptoms by now. Lots of night time twitching (big ones in my right leg and right shoulder) and small daytime ones (under right eye, right buttock-ha! Basically all over my body, but way more on the right). By now I’m also having massive trouble walking, can’t stay in a straight line and for about 4 months was having real problems picking my legs up, so was doing an elderly person shuffle. This was much much worse when the temperature was warm and I felt very weak all over. I was also seeing flashes of light from my right eye at this point, and sometimes little rainbows.

Had the neuro exam about 3 months ago, which basically said I was fine (fell over doing the balance thing and couldn’t tell when the ‘vibrator’ on my ankle was on or off, but fine nonetheless. But this neuro referred me for another MRI because of the weakness, when I told her about the previous lesion she said lots of people probably have them but don’t even know. So… I had the MRI done 6 weeks ago, it was just a head MRI. 2 weeks after the MRI I got this weird eye thing which I thought was conjunctivitis but GP sent me straight to A&E who said Optic Neuritis(aargh), but other docs have since said was ‘just’ inflamed eye nerves. I don’t want to make a massive deal of the eye symptoms because I just had an optic exam and my vision is fine, and I REALLY need my driving license.

So, I phoned the neuro secretary yesterday because my results were not yet back. She said there are no new lesions from the head MRI and she will book me back in to see the neuro. They’ll send me a letter out in due course’. I was so so certain that these were MS symptoms, but without any new lesions I look and feel like a first class idiot! So I guess partly I wanted to vent, and also to ask if anyone else could relate to this??? I guess I really need to speak with the neuro.

Forgot to say, my mum has Myasthenia Gravis, my grandad (her dad) had RRMS and my grandma (her mum) had MND, so we have a very strong family history of neuro disorders! I just feel at this stage that I’m going to get fobbed off with fibromyalgia… I know no new lesions is good news, but now I’ve hit a wall…

hi

prepare for your appointment with the neuro.

you are NOT an idiot, if anyone at the hospital makes you think you are, then they need some in service training!

that’s some family history you have there by the way.

i had an aunt (mum’s sister) with ms.

you deserve and ought to be treated with respect.

we don’t go to hospital for fun.

hope you don’t have to wait too long for this appointment.

carole x

Hi, you need someone to take this seriously.

But diagnoses arent always easy to get.

Hang in there and stop thinking you are an idiot.

I, as a learned layman, say you are not!

And Polly knows you know!

pollsx

Hi

I agree with Carole and Poll, but then I usually do. You are not an idiot. Having lesions in your brain is quite enough to make you feel a tad concerned. Having a family background of a variety of nerve and/or auto immune ailments is also clearly worrying you. You’ve also been seen by some doctors who appear to have the sensitivity of a gnat.

The family background (in my not very humble, but decidedly non medical opinion) is probably unconnected with what you’ve experienced. The neurological disorders like MND aren’t necessarily genetic in cause, in that often there may be a slight predisposition but it’s not exactly an inherited disease. Likewise, having myasthenia graves and MS in your family may have a slight genetic component in that they are both auto immune disorders so there may be a small genetic component, but you can’t call them inherited either.

With regard to Optic Neuritis, in my understanding, ON is inflamed optic nerves, in MS, demyelinating inflamed optic nerves. So there may in fact be no difference between what doctor one at A&E has said and the other doctors who’ve downplayed it.

I think speaking to the neuro is pretty much essential. You perhaps need an explanation of where the lesions might have come from initially and what effect they could be having on you? Also, have you had MS type relapses? And what are you to make of all the varied symptoms you’ve had over the years?

Once you do get an appointment with a neurologist, I suggest you write down: a) a list of everything that has happened to you that you believe is connected. Included rough dates and how long symptoms stayed with you or in fact whether there has been any long lasting effects. And b) what questions you have with regard to the MRIs you’ve had, especially the lesions you have which have shown no changes. You could ask whether the MRIs have been of the brain only or the spine as well? You could also ask if they were done with contrast (which shows up more detail)? And whether the lesions could be causing any later symptoms. Also this question of optic neuritis or ‘just’ inflamed optic nerve. If it’s the latter, then why would you suddenly have it? Take these notes with you and refer to them, the doctors tend to quite like that, it shows that you’ve done some thinking and are fairly accurate in what you’re saying.

There are probably a thousand other questions you could ask, I’m just scribbling the immediate ones that spring to my mind.

But, take someone with you to help remember what is said. It’s so common to have an appointment that you come out of feeling good about, but then later can’t remember what on earth was said to you.

Sue

Thank you all for your replies and kindness! Sorry I didn’t reply sooner, I’m new to this and thought I’d get an email notification of replies or something. So… I saw the neuro today, who told me exactly what the hospital letter had said; there are no new lesions. She also said there was nothing more she could do at this point. Upon further discussion, it transpires that no, there are no new lesions or ‘significant’ changes. Sadly I lost it a bit at this point (I’m an ugly crier too) and told her it is significant to me! She then explained that she believes I am having ‘functional symptoms’ but that these can be caused by stress. I’m not stressed! The only stress in my life is because of unexplained neurological symptoms! I told her I’m sure there’s something, there have been too many coincidences over the years and nobody seems to be joining up the dots. So,she did another neuro exam and said she’d refer me for a spinal MRI, with contrast. I get the impression that this is to just shut me up, but I’m pleased about it. Although if it shows nothing then I’m obviously just crazy (or stressed). My physio said last week (ongoing right shoulder, back and right pelvis problems that she can find no orthopaedic origin for) that I should push for this as it will definitely show up any neuro problems. Is it just me, or does having a no diagnosis make things difficult? On top of this, I’ve had another appointment through for the ophthalmology department. I’d been discharged over the inflamed nerves eye thing, but the optician said they’d write to the hospital with their findings so I guess they’re just following it up. What findings?! Aaargh! I’m thinking of just letting the whole thing go, maybe I’m just looking for trouble…