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Confused

Hi

I have been experiencing neurological problems since (and during) chemo several years ago. I already have a number of auto immune disorders but new symptoms started to appear. My GP was very concerned and referred me to a neurologist as well as sending me for an MRI to check for brain tumours.

The MRI showed a number of small lesions and the neurologist noted a marked weakness in my limbs (on one side more than the other), essential tremor, confusion, poor coordination, poor balance and poor reflexes. He suggested that it may be functional neurological disorder (FND) with non-epileptic seizures.

I was referred to the Rehabilitation Unit to help me improve balance and coordination, but they are treating me as an MS patient as they say I have classic symptoms. As soon as I walked in and they assessed me they booked me onto various MS management workshops. They can’t believe that an MRI showing lesions and the classic symptoms I have isn’t being investigated further and my OT has now written to the neurologist about my case.

Has anyone had a similar experience of lesions and classic MS symptoms being classed as FND? I’m totally confused by this now.

Hello

Your neurologist will have looked at your MRI and decided that the lesions you have are not ‘demyelinating’ I assume. That would be the reason why he didn’t diagnose MS, but FND instead.

Myelin is the substance that covers your nerves and brain (ie, the Central Nervous System). In MS, inflammation attacks the myelin, causing lesions or plaques on the CNS. These lesions are like scars. It is possible to identify the difference between demyelinating lesions and other lesions that are not due to a demyelinating process.

‘Classic symptoms’ of MS could be classic symptoms of lots of other disorders. There are so many symptoms associated with MS that are shared with other diagnoses, that it’s not really possible to diagnose MS from symptoms alone. The neurologist will have done a neurological physical examination as well as the MRI and gone through your history (including noting your other autoimmune disorders) before deciding that it isn’t MS. And FND can look quite a lot like MS.

At your rehabilitation centre, are you just seeing physiotherapists and occupational therapists? Or are there neurologists / rehab specialist doctors too? If the information that it ‘looks just like MS’ comes from the OT/PT, then fair enough they’ll query your diagnosis with the neurologist, but I wouldn’t necessarily expect the diagnosis to change.

Wishing you the best of luck.

Sue