neuromyelitis optica (NMO) or Devic’s disease

[jrabbit]

My mother was just diagnosed with this. I'm looking for any information/advice anyone has for me/her. It has affected her left leg mostly - her foot/ankle being the main thing. Steroids have caused some improvement, but she is having bladder issues, as well.

My mother is a doctor, and she is receiving what she believes to be excellent care, so I am not asking for help in that area.

What I do need is assurance that she'll be "ok" - that it won't be devastating - that it isn't genetic (should *I* be worried about me personally?) - what can I do to help her emotionally? - how can we help her nutritionally?

She's pretty traditional about medicine and diet - and my family is less so (we are vegetarian, homeopathic).

She is 64, in good health, otherwise, and is VERY active and crafty - I know she's already frustrated by not being able to be outside gardening, but I don't know how it's affecting her ability to quilt, knit or cross stitch. They live in Wisconsin, us in Texas. They are driving down next week for a trip to the beach with us and my brother, which was planned months ago. We will be spending a week in a beach house, which is something we try to do every year - we spend our days on the beach strolling for shells, and we cook and do crafts and play games with the kids. I'm so happy that they are still coming, but I can tell that she's sad that she won't be able to go for her regular beach-strolls. She has mentioned that cooking is hard for her, too - because she can't stand for long periods of time.

My kids know "something" is wrong with Grandma - but that is all.

--janis

[jrabbit]

<bumping since it's on page 2 now ... optimistic that someone knows "something">

[jrabbit]

[Mom2M]

I'm so sorry to hear about your Mother. I don't have Devic's disease but I have MS. Some symptoms are the same and both diseases affect the myelin.

Generally there is some significant disability resulting from attacks. I would expect that since she has trouble standing and walking, that's where the progression will be most noticeable right away.
Because it affects the spinal cord, any area below the lesion is susceptible to loss of function.

It damages the myelin on the optic nerve also, so she may have some trouble with her vision.

For an acute attack, treatment is the same as MS, high dose IV steroids. Usually 1000 mg a day for a few days.

Nutritionally, an anti inflammatory diet has shown some benefit, one example is Swank's diet http://www.swankmsdiet.org/

I do not think it is considered genetic.

The best thing is to be very open about it. i hated when people would talk about me when I wasn't there during the periods of time when I can't walk or whatever and then act all cheery when I was there, like nothing was wrong.

I just wanted them to be able to say stuff like "oh, it's a bad day today, are you having a lot of trouble walking?"
Not stuff like "you look so good!"

Also, you are going to be at the beach and heat is a killer! Because the myelin on the nerves is damaged, it's like having shorts in wires. The heat makes it worse and you need to be sure to have a lot of cold water plus ice packs and those neck cooling gel things. Actually, there is some good info here
http://www.making-strides.net/ShowAr...ookieSupport=1

I'm sorry, it probably is not going to be easy.
There is usually physical disability with Devic's and it can be a lot, but it is manageable and you can help her by taking things slow and easy and just relaxing a lot. Plus keeping cool is important. When she is rested and cool is when her body will be functioning best.

Explain it to the kids that Grandma's nerves that tell the muscles what to do are not working together so she has a hard time walking.

I don't know if this helped but if you think of any other questions I am more than willing to try to answer them.

Take care