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Great to know
posted by Bitnet on 20 July 2010 at 4:28 amThanks for the info I feel a little more relaxed now I understand. I haven't been diagnosed as yet but I'm being treated for Lupus/Devic's overlap syndrome. At least I am a little wiser after reading your article, so once again thanks.
Read the news article that this opinion was posted about:
What Is Devic's Disease? What Is Neuromyelitis Optica? What Causes Devic's Disease?
Excellent Information - Devic's disease
posted by Jessica on 02 Aug 2010 at 10:15 pm
My daughter is 14 now but she was 13 when she got diagnosed with Devic's disease spent several weeks in the hositpal due to optic neuritis and transvere mylitis. My daughter and I receive medical treatment from the Mayo Clinic in Minnesota. She is still under there care and also other physicians.
My daughter has just started on azathioprine due to a relapse in July 2010. Yes depression is very serious when it comes to this type of illness just like any other illness. If that medicine does not work thre are other option out there like mycophenolate, and also rituxan. Wish everyone the best when it comes to handling this illness my child has took it very hard due to extreme weakness she has in her limbs and a lot of other complications.
optice neuritis
posted by JASWANEY on 09 Aug 2010 at 10:33 am
My daughter was admitted in Bombay with complete blindness in left eye, she was treated with steroids and the vision was restored, now they performed a blood test which was positive for Devic’s disease, the doctors have suggested an injections of Rituximab
Good Information
posted by debesay on 13 Sept 2010 at 6:33 pm
My sister was diagnosed with the Devic's syndrom 16 years ago, after her sudden loss of vision, followed by her muscle weakness of her legs. The disease then affected her abdominal area including her bowls. She underwent treatment with immune suppressant medication and steroids to reduce relapse.
This year her disease got a lot worse. Her right hand was first affected and she was treated with Plasmapheresis. Her left hand was then affected which required a second plasmapheresis. However, her condition still remains precarious.
If there are any breakthroughs in the treatment of this debilitating disease, please share it
devics disease
posted by tcolley on 09 Jan 2011 at 7:38 pm
My wife about 8 weeks ago fell ill with leg paralysis. Went to the hospital and was diagnosed with transverse myelitis. She spent a week on steroids and then was sent to a rehab hospital where 5 weeks late was able to leave on a walker. She was home 2 weeks and told me her arms hurt I took her back to hospital and waited for 10 days for the results of her spinal tap. Only one place in Mn can do the test. She lost use of all limbs bowels and as well bladder then she lost the site in her left eye. They began the plasmapherisis treatment and 3 treatment later she seems to be in less pain. We will again go through therapy to hope she can walk. If your dr believes it is neuromyelitis optica beg them to begin treatment sooner than later as the longer they wait the more it debilitates the patient.
Things I wish I knew three years ago...
posted by Ellisa Woodbrey on 11 Jan 2011 at 2:42 pm
Three years ago my mom lost all vision in her left eye. She saw local eye docs and was even sent to a premiere MD research hospital for additional evaluation. No one ever came up with a solution as to why it happened and her vision in that eye was never restored. A little more than a week ago, she was taken to a WV premiere research hospital because she had been complaining that her back hurt and her legs felt numb and she had fallen and could no longer operate her legs or go to the bathroom.
She was diagnosed with transverse myelitis and has been undergoing treatment for that. Today the docs told us of this NMO diagnosis. I wish we knew this 3 years ago so that we could have started drug therapy then and maybe had a little more time before this happened. Mom just retired from teaching school this year....Mom and Dad had plans.....now,with the way the prognosis for this sounds, I am looking for someone to offer us some hope....share a positive experience...anything to offer support as our entire family is reeling from this.
NMO
posted by Rod Adams on 29 Mar 2011 at 2:22 am
My partner was diagnosed 8 years ago with first MS, then they changed it to Devics Disease, then back again and now confirmed NMO, She has no vision in her left eye just black blur, We have found a treatment that has stabilized her so far, with no relapses since her first ordeal, also bladder loss control.
12 Months ago she was having falls her left leg would simply just go on her and falling to the floor in public or home.
She is 32 yrs old.
Her treatment consist of the following
Baclofen (antispasmatic) 2 tablets 1 morning 1 night
Oxybuten 2 tablets 1 morning 1 night
Sodium Volporate 3 times a day
The main treatment that has been working so far has been Imuran
She hasn’t had a fall within the last 4 months, neither her leg going numb. Our specialist here in Australia believes it is doing its job.
She has her ups and downs days but we have a strong belief she is definitely getting better, also a cause of relapse is a stressful lifestyle, we have eliminated stress within the last 4-5 months and seems to be working, I personally believe it’s a psychological order as well, she has been told...
no exercise, no running, no wearing high heel shoes and going out late at night, no this no that....well she doesn’t pay much attention to what they say not to do, she’s strong and doesn’t let it beat her, all though somedays she does fall to pieces.. at the moment she is on no pain relief awaiting to see pain clinic specialist, she was on Lyrica 150mg seemed to do nothing, we tried tremadol before that, side effects were too strong..sleepless nights itching/scratching during sleep...so we will wait and see.
Keep your chin up don’t let it get to her.
I give my wife no pity because she gives none.
I just look after her when needed and spoil her and give her something to smile about every day, it’s that simple. Guess it’s the only way we can beat this terrible disease.
NMO - My Daughter's Story...
posted by Lasonya on 03 Apr 2011 at 12:23 pm
My daughter was 9yrs old when she started having double vision I took her to the hospital and 1st diagnosed with ms then sarcoid now she's 12 and diagnoised with nmo she was on immuran for about 2 years but I guess if your on a medicne so long your body get used to it.She a minor attack and the dose of immuran was increased.But now they took her off and starting her with retuximab cause immuran isnt working.My daughter never had a runny nose never been sick the dr told me her immune system is so good its bad fighting off the things she need.Well good luck to everyone with this situation!
wish i knew
posted by Taylor Slade on 16 May 2011 at 3:54 pm
My mother Tammy Boisselle was sick for three years in her early forties she turned 43 April 30 2011 to be exact. She was a mother of three and was diagnosed wrongly until 01 24 2011 my mother died from device disease yesterday may 15 2011. I just want to say the doctors don't know anymore than you do. Look up what the disease is and see what is need and what the neo scans and other things should look like. I really hope anyone finds a cure for this disease because it a great possibility that it is hereditary.
Devic's disease
posted by Ashley Marie Jackson on 19 Jun 2011 at 9:51 am
My aunt Tracy die from devic's disease on August 22,2010.Do there are cure for devic's disease?
Miss Living with Devic's NMO
posted by Jill on 10 July 2011 at 3:04 pm
It was 04/08 when it all started. I was 38 years of age. I am a black female who resides in Ohio. Intially I went to one hopsital who turned me away and I remember the MD specifically saying that I may be coming down with bellspalsy, but did not want to give me the medication for fear it was too strong and turned me away, that was on a Friday and that Monday I was hospitalized for 35 days, I was released from the hospital before receiving the proper diagnoses. I was first diagnosed with ADEM, until my test results came back from the Mayo Clinc, testing postive for Devic's. I was released from the hospital with paralysis on my left side. I continued my PT and lost vision in my left eye which was restored by being infused with steroids. Started receiving Rituxian infusions every 6 months. This diagnoses made me go out on a medical disability from my employer.I was able to return to work a year later with complete use of my limbs. Sure I still have some paralysis, fatigued, back pain, and muscle spasms- never the less I am a firm believer in Christ and Rituxian. I was placed on bacoflen for the muscle spasms. This is just a briefing of what may in hopes help the next person. I must say I am a firm believer in Rixtuxian!!!!!!!
rash and blisters
posted by Lorraine on 18 July 2011 at 2:32 pm
Since the 80's i've had rashes and blister on certain parts of my body..both wrist, hands around knuckles, behind ear lopes and now my legs like red spots. Around my ankles blisters with pulse develops. At one time in my life my face broke out with big blisters. Dermemtology says i have skin acezema, I have been using a cream(tube-Desoximetasone-generic) they go away, but always come back,same place.
Is it to late?
posted by HERBERT PORTER on 11 Aug 2011 at 7:08 am
My sister contracted this condition in January 2011, and was very possitive going through it until she was released. Two or three weeks later, in March, she had a relaps. She's been from the hopital to Assistant living since. Knowing God is in charge of our lives, our family and church have been praying and believing for His healing power. I guess in the waiting stage i'm asking is there any advise to help that matters not get worse because of time. From the testamonials some have lost there lives from beening uneducated or misdiacnosed and my heart goes out to those persons but i'd like to help her if possible. Thanks so much.
My Daughters NMO
posted by Rhonda wiggins on 16 Aug 2011 at 6:56 pm
My daughter is now 21, but she was 20 years old when doctors first diagnosed her with nmo. In May she started off complaining that her body was aching and hurting along with a headache. My first thoughts was she had flu symptoms. But, as the days progressed she started to lay around constantly sleeping and stressing she didn't feel good.
Monique's Story - MS and then Devic's Disease
posted by Monique Smith on 27 Oct 2011 at 4:41 pm
I was diagnosed with MS in August of 2007. And as of May of 2010, i have been diagnosed with Devic's Disease. Since then i have lost eye sight in my right eye and loosing it in the left. I have episodes of falling and lost feelings in my legs and my right arm. Having respitory issues, and suffering from heart palpitations. I also have urinary difficulties.I need info on different meds that will help.
I think I have NMO
posted by Bonnie on 03 Jan 2012 at 8:59 pm
It all started on December 2nd 2011. I noticed a dark spot in my vision of my right eye. I waited the weekend and when the spot did not go away I went to my PCP. He sent me to an eye specialist who noticed my optic nerve was swollen. I was then sent to another specialist who ran a bunch of blood work, a brain MRI, and a spinal tap. All the results came back normal. I was then told that I probably had a virus and had to let it run it's course. I was put on iv and oral steroids to treat the optic neuritis.
A few days after starting treatment I became very sick. I had extreme neck and back pain, numbness in my hands and feet, chest pain, burning sensation throughout my body, and even had a hard time going to the bathroom. I went to the er 3 times and was basically told that they had no idea why I was feeling the way I was and that maybe it was stressed induced. I went to my PCP and was referred to a neurologist who can't even see me until February. I am still having symptoms, my legs are still weak and I tire very easily. I don't know what I should do. I found this disease on line and it sounds like it is what I have. I am very frustrated.
Fight
posted by Timi on 09 Jan 2012 at 9:26 pm
Yes the information is about what is known at this time . I have searched and searched for more people living with the severity of the disease. I have the reacurrant NMO, and may be on what seems to be the third attact. I wish there was an end in site...I am thankful for my Drs who remind me of how resillent the Lord has made me. I just want to be an encouragement to those going through to keep living one day at a time. It is not easy especiallly for my family, including a ten year old daughter, friends, as well as it is for me. Hold on to God almighty, and get to know Him if you don't. To those who lost loved ones I am sorry, the rest fight until you cannot fight any longer.
my husband has Devic
posted by reida on 13 Mar 2012 at 4:47 pm
My husband will have an infusion of Rituxber tomorrow 3-15-12...has anyone use this before, and how did it help?
He is 59. poor vision in 1 eye and he legs are wobley.
He had a bad reaction to imeran. Your all in my prayers. Reida
Support Is King.
posted by Charlie on 17 Mar 2012 at 1:13 pm
My mother, 52yr old female, was at first diagnosed with MS, then upon further investigation her idotic neurologist found that it was not MS, but NMO. She has been sick for six months and treatment is going to begin this Monday, 19-03-12, with IV corticosteroids administered over a five day period. She has no feeling in her feet all the way up to her thighs with severe urinary and bowel issues, partial paralysis of her feet and extremely poor vision. After months of worrying she has finally accepted her condition for what it is, and simply takes every day as it comes. The one thing she, nor I, can stand the most is the vision loss. Both her eyes are affected, she can't drive, she can't read - she explains it as "blind spots", like when you look at the sun for too long. Her walking is affected, she wobbles and sways almost as if intoxicated, and I'm trying to convince her to use a walker which has not gone over very well. Through the course of this tumultuous time, I have found that unconditional support of the person affected is the one thing they desire most from those around them. I myself have dropped out of college to care for her, because the attack started six months ago and there is no remission in sight, and she simply cannot take care of her hygeine requirements or even read the mail she gets. Just be supportive and pray for the best, offer comfort and love.
Devic's Disease
posted by Mariah on 19 Mar 2012 at 5:03 pm
My brother was diagnosed with Devic's disease in 2004 when he was 14. He went in for a gallbladder surgery and went home to find out that he went blind in his right eye and partially blind in the left eye. They treated him with plasmapheresis and steroids which did help. Up on that they told him he wouldn't live to be 18, my brother is now back in the hospital for another flare up.
He came in due to him having a crawling burning pain going through his body. They gave him steroids and they subsided for a little while for a short relaxer. The next pain was burning all over the body and his having the same burning in his spine and legs. Then they gave him the plasmapheresis again which has helped tremendously but it's just one thing after another. Since they haven't really dealt with anybody that has lived this long they are just taking it as it goes. My brother just had is 23 birthday a month ago. I hope we can make it through yet another trying time.
Are there any support groups for Devics Disease
posted by kyte on 18 Apr 2012 at 6:10 am
throught out the past 7yrs or more ive suffered from various symptoms of the disease starting off with migranes that eventually got worse..it was put down to several different things from my diet,vertigo,chest infections etc. It was only two yrs ago after a spell in hospital for a suspected stroke..several Blood test..a lumber puncture and a near miss kidney operation(as the steriods i was being treated with were affecting my kidneys) they managed through an indepth MRI to find an immflamation on my brianstem and my optical nerve i was diagnosed with Devics.
Everyday i live with the fright of the symptoms of this disease..i cant exercise like i use to...my body aches...my eyes hurt and the azathioprine i have been advised to take is mae me feel depressed..upset and bloated. I keep up a brave face cause im a loneparent of a my 16 soon to be 17yr old. This life is not good...im not able to do the things i use to do..im unable to stay awake most days...so unable to wor at the minute..at 34 this is n way to live. There is no support i feel cause unless your going through it your unable to sympathize.
Does anyone know of any support groups out there..x.
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