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Unsure and confused

Hi, my first post so please bear with me.

I am a male aged 48. Two years ago after a run my left leg felt weird and had sciatic pain ( which I have had previously). Gradually my left leg felt out of sync and running was difficult. I had a back scan which showed nerve compression, had conventional treatments before having a disk replacement L4-L5 (feb 2018) . After op had weakness in my knee as things were still not right (sciatic pain went) had cartlidge op to sort that out (june 2018).

Since June 2018 things have got gradually worse and I have to use crutches to get around as left still does not work properly and right leg is now joining the party.

I’ve have been scanned from brain to knee and nothing shows up, no lesions etc. I have also had nerve tests which show nothing untoward. I have done the Babinski test where my big toe goes up (not a good sign I know) However to all intents and purposes I am disabled as without crutches I would fall over.

When I google my symptoms (dangerous I know :)) MS keeps cropping up but I have no other symptoms apart from dodgy legs I have no other symptoms, vision is fine, no shakes, no muscle wastage ( i do exercises) etc

My next appointment with NHS is in June as I am classed as routine as nothing is showing up. So at the moment I am confused, angry, terrified, confused and a whole host of other emotions.

Hello

If you’ve had MRI scans and no demyelinating lesions appear anywhere in your central nervous system (anywhere from brain to the entire spine), then you can’t have MS. The Babinski sign doesn’t categorically diagnose MS; it may indicate a neurological problem, and is often a clue used by neurologists in making a preliminary judgement as to which disorders could be likely and thus the tests required.

If you look at https://www.mstrust.org.uk/a-z/mcdonald-criteria you can see that absent demyelinating lesions, MS cannot be diagnosed.

Hopefully the doctors will be able to establish a cause of your problems. When you next see a doctor, hopefully a neurologist, you can double check this information.

Best of luck.

Sue

Hi thanks for the reply, its just all confusing and frustrating as I can barely walk and there is no indication of what is wrong as I have no other symptoms aprt from partially functioning legs.

So went private to see neurologist, he did some further tests and I had a positive Hoffmans reaction in left arm and I have brisk reflexes. He had another look at my brain scan, spinal scan and nerve tests and confirmed these are all clear of lesions etc.

He is going to discuss my case at a weekly neuro consultants meeting that he attends as he is unsure what is causing my issues.

Has anybody come across this type of thing before?

Well there’s always What Is FND - FND Hope International It seems that many people tested for MS are ultimately diagnosed with Functional Neurological Disorder. It isn’t a ‘well we can’t find anything else so…’ diagnosis, it is a real and recognised disorder.

But really, it’s going to all come down to what your neurologist thinks.

Hopefully you will find an answer. Even if it’s not quite what you’ve been expecting.

Sue

Thanks for the link Sue, its just bl@@dy frustrating

Neurologist showed brain and spine scans to neuro-radiologist and confirmed no lesions. However, I am having a lumbar puncture this friday and visual evoked tests and Somatosensory Evoked Potential tests on 6 June. Any idea what he is trying to diagnose or eliminate. I had some nerve tests done about 6 weeks ago and they were all normal.

Lumber puncture came back as normal and waiting for visual evoked and sensory evoked test results. Still can hardly walk and its getting worse.

Aw I’m sorry. It still seems wrong to say sorry there’s no evidence of MS, but sometimes it feels right. When you’ve been suffering for quite some time and previously been fit & well, an answer would have helped.

But I suspect that’s probably the last MS test. With no CNS demyelinating lesions and no Oligoclonal bands in the CSF alone, it seems that’s it for MS.

I really do hope there’s some answer for you. Soon.

Sue

Hi Ssssue, I think that you are right and that MS is ruled out which is a relief but still none the wiser as to what is wrong with me. I will say au revoir now and send you all my best wishes.