Have you had similar?worried mum

New diagnosis and before diagnosis
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Hi..

I’m very new to this site, I am quiring MS. I developed trigeminal neuralgia about two years ago, it came and went, I started pregabalin after an incredibly horrendous flare up, two months ago I had an opticians appointment, she put a rush on an appointment to the main ear and ear in the country, who sent me to A&E who said I have optic neuritis. I was kept in and put on high dose steroids. I was referred to neurology, a neurologist came in asked a few questions referred me for urgent CT and contrast MRI, I left hospital went home. I had no follow ups with the hospital no neurologist appointments, but I got a letter in the post saying all’s well.. I did have afollow up with the main eye and ear who asked me to continue attending them and believe something is wrong as I failed the swinging flash light test and my vision is still obscured. The eye and ear ran blood tests and want to refer to a different neurologist, I have double appointment Tuesday with them and I’m worried about MS as my cousin has it and possibly my aunt, every time I look into it there seems to be strong correlations between the two and MS, I don’t know what I’m asking, I suppose has anyone had similar, I mean trigeminal neuralgia was incredibly painful but it’s just pain Ill survive, the eye sight problem was very irritating and the steroids dear god were a nightmare to stop I felt like I was hit by a bus and a passing train . I’m 40 and mum to a severely disabled child, I’m curious if anyone had the beginning similar to this. I don’t think the hospital took it serious were as the eye and ear are very worried. I’m so confused could this be MS or is my head just messed up.

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Hello @jnsaunders86 my sympathies and best wishes to you during your time of worries. I have absolutely no idea if your symptoms are a result of MS . They could be but there again if you have had a clear MRI they probably aren’t but what do I know? I think you are just going to have to wait for your appointment on Tuesday. At least it isn’t a long wait ( some unfortunate folk have to wait weeks for an appointment ) and in what is just a couple of days now and with luck you will get answers to your questions.

At 72 years old and after 19 years with MS I say to a lot of people: MS can be the pits but with so many new and effective MS drugs around now then if it is MS you could have many many years with no significant symptoms.

After 19 years on one of the very first and lower efficacy drugs I’m still walking and enjoying life. Admittedly my walking isn’t great , i use a mobility scooter for anything above a 10 min or so walk and I take longer to do a lot of things but e.g I still climb stairs , sometimes two at a time, still do squats and press ups ( badly) , still go out for meals , cinema etc etc which is all a long way of saying don’t despair ! You could have many enjoyable years to come