Last reply 3 years ago
LimbO & scared

I started having problems with my left eye a couple months ago. Pain when looking up, down & sides. Started with a bad sinus infection. Got meds for sinus junk but eye continued to get worse along with the vision in that eye. I was in ER & admitted to hospital on 12/18 & diagnosed with optic neuritis. Had 3 MRIS (brain, neck & spine) & spinal tap, blood work, xrays…. I have many white lesions on my brain, 2 on spine. Neuro & optic Drs. Did 5 days IV steroids in hospital & I came home on 12/23 on taper down steroid. The pain in my eye was gone by 3rd day of IV and vision is pretty much normal now. The side effects of the steroids are Terrible. They told me that I couldn’t be diagnosed with MS unless or until I have another physical event, such as the eye. Also said that it is not common, although not impossible for a woman to b first diagnosed at 52. I have felt so nasty from steroids (I think) to know if there is really anything else I should b concerned about. I go back to neuro & optical in a couple weeks & repeat MRI in 3 months. I really don’t know what to think of all this. I am just taking it a day at a time. Was wondering if you all have any thoughts or advice for me moving forward. Thanks in advance. I have never been Sick or missed so much work in my life.

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3 years ago

MS nowadays is a manageable condition. Being in limbo is NOT manageable (in my opinion). Nothing that has happened to me since being diagnosed (at age 53!) has been half as bad as the months leading up to diagnosis. You are isolated and at the mercy of your imagination. Once I had the diagnosis, my neurologist told me that he was more worried about my mental state than the MS. If I had my time again, I think I’d have demanded strong anti-anxiety meds and sleeping pills to help me get through it. As it was, I relied on friends and family to keep me sane… and only partly succeeded. It would also have helped to know what was going to happen to me post-dx: i.e. a choice of meds to control it, support from specialist nurses, remedial physiotherapy. All very positive and reassuring and a million miles from the pit of terror that I had descended into. My only advice would be to keep a daily symptom diary (take a look at what I posted on this to Kadi21), channel your energy into making this as accurate as you can and when it’s done try and discipline yourself to stop thinking about MS for the rest of the day. A big ask, but remember – this is a holding process only. Things WILL improve. xxx Kay

3 years ago

Thanks so much for sharing your experience. It truly helps me more than you know. I will start on a symptom diary Today. So comforting to hear from someone who Has been where I am….

3 years ago

@nugie0222 , a diagnosis of MS is never given easily. The medical people want to make absolutely sure before they give your problems a name.

It may be easier if there was a condition called “Singular Sclerosis” because, at present, you don’t fulfil the “multiple” condition of Multiple Sclerosis! You just get left with conditions like Optical Neuritis (ON), Clinically Isolated Syndrome (CIS) or Transverse Myelitis, all of which could progress to MS.

As @cameron suggests, you need to find a way to take this situation out of focus, so that you can get on with your life. Keeping worrying about it has a nasty habit of becoming a self-fulfilling prophecy and is best avoided.

So be good to yourself. Pamper yourself even…..

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