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STORIES -'My daughter has Devic’s Disease' 
-Mum wants more information


My daughter is 41 years old.

For years she vomited every day (I saw that this happened to one of the people that shared their story).

She went blind twice in the same eye (the first time she gained all her sight back, but the second time only part of her sight back).

She has had back problems for years and was told she had a bad back. She has had to do physical therapy for her back from time to time. This is how she discovered that she has Devic’s disease.

On 9/15/09, she made an appointment to see her doctor and for physical therapy. 9/17/09 she went to work and when she went out at lunch time her knee gave way and she had to have help getting back to her office. That night she went to the hospital, they gave her medication and sent her home.

The next day she could not walk because of the pain; had to call an ambulance to take her back to the hospital.

This young doctor took an MRI and found lesions on her spine (T4 & T5) and said she needed to be transported to a hospital in Boston because they were not able to give her the care she needed. (Thank God for this young doctor).

There they found there were also lesions on her brain.

She is now in rehab; can move her big toe and has a little feeling in her leg.

She's now taking vitamins, and is on more of a fruit, green vegetable and fish diet.

She is taking Nourontin, Vitamin D & calcium and not sure if she's still on Baclofen & Gabapentin. She has become diabetic and is on insulin. They said this happened because of the medication she's taking. But I found out that her grandmother and aunt on her father's side had diabetes.

I’m still learning about the disease. I realize each case is different, but would like to know if recovery happens (able to walk again with or without support). I would like to hear from people - what was the time of relapsing occurring.

There needs to be as much information as possible about this little known disease.


 
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