Hi it's great to see some friendly names about.

From 98 after admission to hospital with ON and mobility problems they though MS with me.Even after a few nasty attacks my MRI was still normal.My first neuro said 5% of people with MS can have normal MRI'sand LP.Hedischarged me with ME.

As I'd been so poorly my family had already asked GP for a 2nd opinion.Luckily this was 5 weeks after being discharged from first.I saw a well respected European MS Specialist here in the UK.

He examined me and found optic atrophy,nystagmus,brisk jaw jerk,spastic paresis,positive babinski.He wrote in notes "I think this is MS".He admitted me into hospital and for the second time I was given vigourous testing for everything.As it was a teaching hospital I was also examined by many Dr's including neuroPhysiologists.

My VEP's had been abnormal since 98 but optic atrophy showed on MRI.MY SEEP'S showed nerve damage to right arm and leg.MS Specialist came to see me on Friday morning and said he thought it was MS but it was rare.I asked what he meant,he said rare not to show lesions but not to worry as this was usually benign.

Istayed with him for 4 years saw him every 6 months but never once was examined.The only time I was examined was when he was away at a conference and a colleague did the clinic.My legs had been scissoring and back arching so he eamined legs and increased Baclofen to 80mgs.

I then went through nightmare with spasms,loss of mobility etc.He wanted further scans before considering mitox.I deterioated and had to have physios and OT out to home for 6 weeks.I now had crutches and a wheelchair and was referreed to Orthotics for a brace.

After waiting 12 months for scans with NHS mySpecialist intervened andgot angry.Ifinally got scans after15 monthsJune 2006.My scans were once again of brain and cervical spinal cord.I have never had a full spinal MRI or an enhanced MRI.

As my brain scan still only showed optic atrophy I was told it can't be MS.The reason being MRI would have to show changes and after8 years of symptoms all MS patients show cerebellar atrophy.

I was discharged told they know something is wrong they just can't identify it.I haven't seen a Dr since August 2005,apart from GP I lost faith.

I take my Baclofen plus others,fatigue I fight every day and would love 12 hours a day out of bed,mobility and balance are a joke.

The best ismy Dad had bilateral ON and mobility problems,I've been told it can't be genetic.

Very few MS Specialists will now say MS with a negative MRI or a brain MRI only showing optic atrophy.