I have never posted on a forum, but after some advice. In February 2012 I suffered with some twitching in my eye and lower chin area. You couldn’d see it but I could feel it. I was referred to a neurologist who suggested some botox he thought it might have been bells palsy if it came back but sent me for an mri just to check. The MRI showed brain lesions and I was referred for a lumber puncture which confirmed MS markers. My specailist has said I don’t yet have MS but have the markers and that was kind of it. Emotionally this has been hard I am a mum of three and work full time and whilst trying not to think about it occassionally I keep having a funny sensation in my eye. It feels very tired I have been to the doctors and had an eye test but told all is ok. I know I probaby don’t get enough sleep and extermly busy at work but has anyone else been in this situation. I don’t know what to expect will I get MS i just don’t know I am 34.
I think the neuro meant that your lumbar puncture showed that you have oligoclonal bands in your CSF (cerebrospinal fluid), but not your serum (in blood) which means that your immune system has been active in the nervous system, but not in the rest of your body. This is the finding that points towards MS.
To be diagnosed with MS, a patient has to have had more than one area of the nervous system affected and to have had more than one attack. From what you’ve said, you’ve had just the one attack. It’s not possible to say about the first bit, more than one area, without knowing your MRI results.
Someone who has had only one attack and has had only one area affected has what is called Clinically Isolated Syndrome. The overall odds of someone with CIS going on to develop MS is 50%.
Someone who has had two attacks, but only one area affected OR one attack and more than one area affected has what is called Probable MS. Some people with probable MS never go on to develop MS.
Research has identified different factors that increase or decrease the odds of someone going on to get MS from CIS or Probable MS, but none of these make the odds 100% so it’s not particularly helpful to dwell on them. The main thing to concentrate on is that it may never happen again.
You may be stuck with the funny eye sensation, but you may also find that it gradually improves. Do make sure and get your vitamin and mineral levels tested though - twitchy eyes are a classic sign of deficiency and it may be that the whole MS scare thing is masking something that might be easily fixed. Your GP should be happy to send you for the relevant blood tests.
I know it’s easy for me to say, but I strongly recommend you try and put this behind you. You may never have another attack - and worrying about something that may never happen is such a waste! It wouldn’t hurt to take vitamin D3 supplements (5,000iu a day is the norm for people on here; Healthy Origins are cheap on amazon at the moment) as they might help to prevent a second attack and, if I were you, I would start giving my children a supplement too - vitamin D3 plays a role in the development of MS (I can’t remember the dosage, but you should be able to find it out on the vitamindcouncil website). Other things that might help is to not smoke, to eat healthily and to keep fit, but other than that, go and enjoy your life and don’t look back!