Living in limbo…MS or NMO?

Hi everyone my name is Micky i am a 38 year old father of 2,living in Norway.


My story began in 2007 when i lost the feeling in my left thigh. It was not at all painful so i didnt visit my doctor to check it out and regained feeking a couple of months later.

In Feb 2008 i had a pain in my left eye which i thought was a sinus infection. However a few days later i noticed that my vision wasn’t right. I visited my GP who suspected Optic Neuritis. A week later after going totally blind in my left eye i was admited to hospital where ON was confirmed and treated with intravenous steroids. I recovered fairly quickly and regained my sight. MRI revealed nothing and i was tested for many different things including NMO which came back negative.

Ten months later same story with same eye, however i only regained a tiny amount of vision. Same procedure again with same inconclusive results.

April 2009 turn for the same turn of events only this time in my right eye. Again treatment with steroids followed by complete recovery in right eye again nothing showed on MRI.

Two months later same again in right eye same treatment this time with no success and again nothing showing on MRI. Sorry if this sounds repetitive but i want everyone to Get the whole frustrating picture.

In Jan 2010 my boss who is based in Louisville KY, decided enough was enough and told me to Get my medical notes translated and sent over. He contacted John Hopkins who having reviewed my notes said there was nothing they could do. He then contacted the Mayo Clinic in Rochester who said they would see me.

I visited Dr.Pirko a fantastically sympathetic and obviously talented doctor who sat me down and described his thoughts and suspicions. It turns out that in Norway they had done the same inadequate MRI Scan all four times, which he described as 20 years behind the times.

After a bundle of tests still same negative NMO, clear spinal tap( an NMO characteristic, MS patients fluid notmally contains protein)””. However after an intensive 2 hour MRI it was found that i have 3 small lesions on the brain and 1 on my spinal cord.In 3 days they found out more than they had in 2 and a half years in Norway.

Dr. Pirko said that with all the evidence he couldnt say definately whether i have MS or NMo but he thinks that due to the frequency and severity of the attacks he leans more towards NMO. He recommended that i should have Plasma Exchange and begin imediately on Cellcept.

When i got back to Norway i arranged an appointment and saw my 6th different neurologist who was shocked and embarrassed by my story . It turns out they could have done the decisive MRI there all along and didnt have any excuse why it hadnt been done.

He arranged the Plasma exchange which was ungortunately unsuccessful, and prescribed Cellcept. Today i am left with less than 5 pct vision in both eyes , but have been stable after beginning treatment with Cellcept. Its hard not to think what might have been if they would have picked up on my lesions in the first place and treated me earlier, but dones done and you have to look forward.

I know there are a lot of people who have this disease that are a lot worse off than me. Today i am still working full time and lead an active life.

My message to everyone is stay strong and never give up. With the great work that the GJCF and all the doctors involved with the foundstion aredoing who knows what breakthroughs are around the corner.

Thanks to GJCF for all your great work.

I would be grateful to hear from anyone else who has a similar story to mine. Also if there is anyone who feels that i can help them please do not hesitate to contact me. Sorry again for taking up so much of your time but thankyou for reading this story. Good luck and warm wishes to you all.

Leave a Comment