some advice please


I would be grateful for some advice. haven’t been diagnosed with MS and hopefully that is not the case.

1st episode of symtoms was in November 2012 and I was off sick for 9 weeks. Never had a problem before then. Symptoms included left side blurred vision, fatigue, numbness and tingling both hands and feet, couldn’t walk properly and generally unwell. 1st neurologist told me i was crazy and referred me psychiarty lol.

My eye got so bad that i went to the eye hospital and they referred me to another hospital querying MG. 2 weeks and no improvement was discharged from hospital with negative acetylcholine test. I was followed up by the neuro in January 2013 and he prescribed gabapentin 300mg x 3 daily. Said I probably suffering migraine. In that time I had a positive lyme disease test IgM only but he said probably not lyme disease.

All got better slowly and I got back to work etc.

Again in January 2014 I started to feel fatigue again, then came the left eye symtoms again.

Left eye visual disturbance with slight colour change and pain behind the eye, droopy and swollen left face with numbness which is now extended inside my mouth and lips (like I have been to the dentist).

I had fatigue, joint and muscle ache/pain, can’t feel my hands in the morning for ages, constant high pitch noise in both ears which appeared appx 3 weeks after the eye symptoms (still has not gone away). im tippy and off balance and generally feel unwell. Shortness of breath is the most recent thing and I had a d dimer test which was really high but lungs were clear.

In January I had an mri which showed ‘intraorbital segment of the left optic nerve was slender with hyperintensities suggestive of previous left optic nerve neuropathy’.

Pet scan showed up take in the tonsil area on 2 occasions had a biopsy yesterday.

I have had 4 lyme disease test (over the past 2 years) all IgM positive and just finished 4 week course of doxycycline which seemed to help a little with the fatigue.

Had another MRI in July which states ’ some residual T2 weighted hyperintense signal change of the orbital segment of the left optic nerve towards the orbital apex’ and ‘a focus of T2 weighted hyperintensity just adjacent to the right periaqueductal grey matter at the level of the inferior colliculus’ not sure what that means? Any ideas would be a good help.

I just wondered if all this could be damage/inflammation of lyme disease or is those results a red herring? Has anyone else had similar experience? Anyone understand the mri results? are the mri results related or are they showing different things?

Any advice where to go from here would be appreciated



not a clue shereen - i dont speak hieroglyphics!

but i’ve bumped you back to the top

carole x

If there’s anything you don’t understand in what you’ve listed, either your GP or neuro would be the best people to explain to you. I’m afraid that most of it sounds like gobbledygook to me you need someone to explain in laymans language…

Rosina x