Lisa's Journey To Devic's
Lisa M is from Niagara Falls, Canada. She was originally diagnosed with
Relapsing Remitting Multiple Sclerosis (RRMS). Relapsing/Remitting Multiple Sclerosis (RRMS) is one of four internationally recognized forms of Multiple Sclerosis. RRMS is characterized by relapses (also known as exacerbations) during which time new symptoms can appear and old ones resurface or worsen. The relapses are followed by periods of remission, during which time the person fully or partially recovers from the deficits acquired during the relapse. Relapses can last for days, weeks or months and recovery can be slow and gradual or
almost instantaneous. The vast majority of people presenting with Multiple Sclerosis are first diagnosed with relapsing/remitting. This is typically when they are in their twenties or thirties, though diagnoses much earlier or later are known. Twice as many women as men present with this variety.
After being mis-diagnosed for years with Relapsing-Remitting (RR) Multiple Sclerosis (RR-MS), She was diagnosed with Devic's Disease/Neuromyelitis Optica in March 2009. In October 1991 she was told she had retrobulbularist in her left eye. In Dec 1991 her neurologist ran tests suspecting she had MS. According to her opthamalogist the two went hand in hand.
By Feb 1992 she was totally blind (not even light perception) in left eye. An MRI was ordered with no results. In May 1992 Lisa was numb from waist down on the left side of her body. She was diagnosed with RR-MS. She started taking Immuran, as it was the only drug known to help MS. In early 1996 the drug Betaseron was approved for use in Ontario and in May 1996 she started the medication. By March 1999, Lisa was declared legally blind.
According to Lisa, in July 1999 she started taking Copaxone for her disease. Betaseron did nothing but make her feel worse. In June 2008 she was denied coverage for Copaxone (Provincial government was paying for it).
In Oct 2008 she found herself back at the MS Clinic for ideas of treatment since nothing was working. In December 2008 she had her second MRI. In January 2009, Lisa went to the MS clinic and she was told she did not have MS and that more tests needed to be run. By March 2009, she was given the diagnoses of Neuromyelitis Optica/Devic's Disease.
Lisa uses a walker for short distance or 2 canes if it is really short. A
wheelchair is needed for long trips (shopping, major sporting
events/concerts etc). Because of her disease and her being legally blind, she has not been able to work since May 1992. In March, she finished a 12 week rehabilitation program to help get her back on her feet. Lisa reports she has lost a great deal of her core body strength. While she believes the rehabilitation was helpful, she feels she could have used a few more months of it. As for her vision, her Doctors say the damage can never be repaired.
Right now, Lisa is now coming to terms with all that has been missed/lost over the last 17 years due to her being mis-diagnosed and she often wonders what her life would have been like had the Doctors gotten it right the first time. She also wonders if the medication made her worse. Lisa looks forward to learning about her new dx. She would love to attend the NMO patient session in LA, Sponsored by the Guthy-Jackson Foundation but because she is from Canada, she does not qualify for the travel grant, it is too expensive for 2 days.
I can not say enough how important awareness of this disease is. Early and Accurate detection of this disease is imperative. The more Doctors and Healthcare Processionals and people in general that are aware of Devic's Disease/Neuromyelitis Optica, increases the chances for prevention.
Prevention or treatment during the onset of Devic’s's Disease can improve the quality of life for individuals diagnosed with Devic's.
By sharing Lisa's story, it is my desire to help people understand that this is a human issue. We can not forget the people who have to live with this disease. They must continue to know that they are loved and supported and that we (Advocates, Family, Doctors, etc) will never stop fighting to raise awareness, funds for research and support until there is a cure.
