Onset of symptoms, how long ago/i.e. # of years Tough question! I thought for many years it was dry eyes from the contact lenses. Or that I was tired. Or I just ignored symptoms because if I didn't acknowledge them then they didn't exist (or so I rationalized)! I'd guess at saying that it's been at least 15 years but no more than 20? That would mean I was between 30-35 years old.
Types of symptoms A misbehaving eye, sometimes it just wacks out and tries to go off in it's own direction but quickly comes back. Sometimes it just wiggles ever so slightly. Sometimes it's just something inbetween and sometimes it's just fine. Double or crossed vision at times. It never hurts, but most of the time I have some type of feeling in the eye that I really can't describe. Something is not quite right.
Which eye has SOM, right or left RIGHT!
When you sought diagnosis Started wanting to know for sure what was up this past June.
Who diagnosed you Dr Rosen, a neuro-opthamologist
How you found/was referred to that person I was seeing a regular opthalologist who had diagnosed me with nystagmus. He was the first person who actually could see my eye move. It's ever so slight, and isn't constant, so it's been hard to see. This doctor requested the MRI and referred me to the general neurologist. While I was waiting for 3 months for my neurologist appt, I stumbled across the neuro-opthomoligist and asked the regular opthomoligist to refer me to him. Dr Rosen diagnosed me within minutes of my appt with him, after reviewing my brain scan and ruling out a brain tumor or MS.
Proposed causes, i.e. head injury, illness My assessment of the cause of my SOM is TMJ.
If you have been diagnosed with nerve compression No
How SOM was explained to you Dr really didn't explain it, just gave me the name and said I could research it myself, that there really is not a lot known about it, that it's a benign but irritating condition, that there are drugs that you can try with little success or severe side affects, discussed botox and surgury, although he agrees that mine is not severe enough (yet?) for that.
Your feelings and response to your diagnosis First I was THRILLED to know that I do not have a brain tumor or MS, and happy to have a name for this condition and to know that there are others (however few!) just like me!
The first treatments suggested to you He's not treating me at all.
Your response to those suggestions, how you felt, what you did or did not do n/a
Remissions I'm not sure that it ever really goes away. It just gets better or worse.
Research that you might have done on your own Just on the internet
Current SOM status Good days and bad ones. Right now it's not too bad.
Your age 49.5
Your gender F