Last reply 2 years ago
3 years in limbo, zero symptoms

So over three years ago now I had double vision, then six months later optic neuritis. I had an MRI and six months after that finally saw a doctor about my results. Lesions everywhere including on my brain stem. The guy listed off all of the common symptoms – “do you get pins and needles when you have a hot bath/exercise/etc etc”. The answer to all of those was no. He asked if I was sure. Yes. He really didn’t seem to believe me. I went home feeling very upset. A week later I ran my first half marathon and got pins and needles in my toe. When I got the notes he sent to my GP it said “patient claims to have no symptoms”. Claims.

Fast forward three years and I’ve run 7 half marathons and one full, and I’m training for London. The pins and needles in my toe came back a few times but has now been diagnosed by my osteo as a dropped metatarsal. He spent a few minutes giving it a rather painful massage and said “see how it feels in a couple of days”. A couple of days later I didn’t feel a thing and it hasn’t come back. My consultant discharged me after my third checkup and asking if I wanted to be discharged. Yes no more hospitals please.

So I don’t really know what I’m complaining about. I’m fit, healthy, happy but I’ll always have this thing hanging over me. The consultant when I decided on the MRI (and he left the decision to me) said some people go for 20 years symptom free after a positive MRI. I just wish his junior doctor could have been more encouraging, because that one consultation left me really shaken up and I still don’t think I’ve recovered from it. Every time I get a headache or my vision goes a bit blurry or I get a bit tired I wonder if it’s a symptom. Always wondering.

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2 years ago

Be grateful for what you have, @fingersandtoes .

Treat the occasional appearance of any symptoms as an early warning sign that you may be over-doing things and to lighten up.

Otherwise, enjoy life. 😉

2 years ago

And obviously I don’t _want_ symptoms. I kind of wish I could tell all doctors about my experience as a lesson in bedside manner. Maybe this guy had watched too much House! “Patients lie” and all. By contrast the consultant was excellent.

I just want to keep running marathons. And taking hot baths. My two favourite things.

2 years ago

Finally, someone with a similar story to me. Had my first and only episode 4 years ago…..nothing before, nothing since. Absolutely no symptoms whatsoever before or since. I was told at the time (while living in Switzerland by a Swiss Neurologist) that it was a definite diagnosis of MS. Since returning to the UK, my consultant here has told me that I DON’T have MS. I had a minor episode/CIS, but to be diagnosed, I need to have two or more episodes. Like you, I run a lot, at least 4 times a week between 5-15k each run (no marathons though). So to medicate or not? Neither my UK consultant or myself can decide what to do, but for now I’m medicated (as instructed by the Swiss – Swiss medication, of course!). Are you on medication? Like you, I’m not complaining, but will the fear ever go away? And also the frustration of the doctors not agreeing on a diagnosis. And did the Swiss medicate me for their own financial gain? Food for thought.

2 years ago

Great news. I don’t think its that uncommon to have long periods of remission, particularly in the early days.
Its been 4 years for me. If I hadn’t had another MRI I’d still be diagnosed. Long may it continue.

2 years ago

I am in the boat as you. It has been a year and a half since my optic neuritis but I think about MS everyday and what it could do to me. My MS neuro suggested I take either Copaxone or Aubagio so I chose the Aubagio (hair loss over a shot every day). I am more cautious than I used to be but I thank my lucky stars everyday that I feel ok. I pay much more attention to how I feel but I still work out 4-5 times a week while I can!

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