NMO Story: I need help

Hello ! I am the Drita Zekaj I want to tell my painful history.

I am 32 years old and 3 years, and I suffer from this terrible disease. it mielite encefalea disease has destroyed my life in all of the ways we have come to function, outside the body all parts.

My life  has become a hell for real. 3 years ago I was a very normal person who would go to work. I am also a mother of an 8 -year-old girl. My dismantled within a month of the first distress all my dreams have been standing by to give the body numbness crisis and then a terrible spinal pain. I can’t even walk or stay sitting, and I can’t go to the toilet- just can do nothing. Now I cant even move my hands to eat by myself. In my state in Albania doesn’t exist any cure for my disease.

Please if anyone can help me write me back to me. Thanks for understanding.

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Gertjana says:

Hi Drita. My name is Gertjana Mucaj and I’m also from Albania. I’m 34 years old and was diagnosed with NMO three years ago, in September 2013 in Italy, at the Hospital of Verona “Borgo Trento”. The first episode happened in 15 August 2013 when I had terrible burning sensation in stomach and spinal ache. After that I couldn’t move the right leg at all and I couldn’t feel the right part of my body. I was treated with cortisone for five days and then moved to Italy in order to find what was the reason for all of this because the doctors in Albania couldn’t find a diagnose. In September the neurologists at Verona Hospital came with the diagnose NMO. From that time I’m taking azathioprine. Now I can walk, I can work as well. But during this period of three years I had relapses every 6 months. Although I recovered I still have numbness in the right leg and in the right part of the body.
It would be my pleasure to meet you. I live in Tirana.

Olgagg says:

Hi Drita. My name is Olga from Texas. I got sick on December 2013 was paralyzed from right side, unable to walk or use arm. I got released on Dec 24 able to walk with a walker & able to move hand more. I suffered a relapse on Feb 2014 & got diagnosed with NMO on April 2014. I know how you feel when I had it that didn’t know diagnosis if I bended down to get something i would feel like my spine was going to break. Most excrutiating pain i have ever known. It’s true that there is no cure but it can be treated. For attacks (inflammation) they give you intravenous steroids. One of the treatments is plasma exchange (plasmapheresis, similar to dialysis). Second one is rituximab (type of cancer drug). Rituximab has worked for me & first got it in April 2014. I get 2 doses in June & other 2 in December. You need to find a neurologist that knows about NMO. I found this excellent neurologist Dr. Ann Bass from San Antonio Texas (Multiple Sclerosis specialist). I recovered though still have some numbness on calf, bottom of foot, still get burning sensation in stomach, sensitive stomach & tightness on the back. Though am doing much better because like I mentioned I wasn’t independent anymore. I needed help for everything. Best of luck that you get under control soon

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