This Is MS Multiple Sclerosis Community: Knowledge & Support

Hi all,
I am very happy to see a forum for parents who have MS. I am 22 years old, and I have a daughter, Jayna, who will be 2 in December. She is my main concern in all of this, I fear that her life may not be as full as it could have been had I not had MS. I had her in 2009 and I was diagnosed this past July. My neurologist says that I have had it for about 10 or 11 years, its just going at full tilt now. I didn't know I had MS when I had my daughter, and due to this being such an unpredictable and difficult disease to live with and the increased risk of passing it on to children, we have decided to not have anymore. Since she is not even 2, she obviously doesn't understand why Mommy has trouble getting down the stairs somedays, and can't always pick her up and play with her. It can be a very difficult balance somedays as I am her primary caregiver most of the time as I do not work and my husband does. We're getting by fairly well as it stands, but some days I feel overwhelmed by the things I was able to do just 6 months ago that I can't do now. Does anyone else have these thoughts? Any suggestions as to how to raise her being concious to my condition, without her thinking Mommy can't be there for her like other Mommies?

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~You get scared, you get lost, you get confused, but in the end, Alice makes it out of Wonderland.~

heya nifty

i'd say, read as much as you can on nutrition and make sure your status is optimal, for both you *and* your daughter. if you want to read up on my 'signature' links they are good starting points even though i don't agree with *all* the advice on certain of those links....

here is a study which pretty much details the list of nutrient problems seen in ms patients, and includes some half decent recommendations for reducing future ms risk for young folks.

The possible role of gradual accumulation of copper, cadmium, lead and iron and gradual depletion of zinc, magnesium, selenium, vitamins B2, B6, D, and E and essential fatty acids in multiple sclerosis.
http://www.ncbi.nlm.nih.gov/pubmed/10985916
"Multiple sclerosis (MS) has a much higher incidence among caucasians that in any other race. Furthermore: females are much more susceptible than males and white females living in colder, wetter areas are much more susceptible than those living in warmer areas. On the other hand, menstruating women have increased copper (Cu) absorption and half-life, so they tend to accumulate more Cu than males. Moreover, rapidly growing girls have an increased demand for zinc (Zn), but their rapidly decreasing production of melatonin results in impaired Zn absorption, which is exacerbated by the high Cu levels. The low Zn levels result in deficient CuZnSuperoxide dismutase (CuZnSOD), which in turn leads to increased levels of superoxide. Menstruating females also often present with low magnesium (Mg) and vitamin B6 levels. Vitamin B6 moderates intracellular nitric oxide (NO) production and extracellular Mg is required for NO release from the cell, so that a deficiency of these nutrients results in increased NO production in the cell and reduced release from the cell. The trapped NO combines with superoxide to form peroxinitrite, an extremely powerful free radical that leads to the myelin damage of MS. Iron (Fe), molybdenum (Mo) and cadmium (Cd) accumulation also increase superoxide production. Which explains MS in males, who tend to accumulate Fe much faster and Cu much less rapidly than females. Since vitamin D is paramount for Mg absorption, the much reduced exposure to sunlight in the higher latitudes may account for the higher incidence in these areas. Moreover, vitamin B2 is a cofactor for xanthine oxidase, and its deficiency exacerbates the low levels of uric acid caused by high Cu levels, resulting in myelin degeneration. Finally Selenium (Se) and vitamin E prevent lipid peroxidation and EPA and DHA upregulate CuZnSOD. Therefore, supplementation with 100 mg MG, 25 mg vit B6, 10 mg vit B2, 15 mg Zn and 400 IU vit D and E, 100 microg Se, 180 mg EPA and 120 mg DHA per day between 14 and 16 years of age may prevent MS."

i'd say for starters addresssing nutrient issues in diet is a better foundation...

when it comes to supplements, if it were me i'd want b-complex rather than focusing on only two parts of the complex, i'd specify D3 rather than non-specific vitamin D, and also vitamin E8 complex rather than just vitamin e.

other than that, the list of recommendations is pretty spot on. although as far as the age recommendation goes, personally i would be monitoring certain levels all along and correcting when and as needed - i would not just blindly wait until age 14 and then do those doses exactly.

by the way the metals build-up has some pretty firm links to the depletion of zinc, so fixing a low zinc level could go a long way to restoring balance.

just throwing ideas out there, hope some of it helps. see signature links below.

take care!

jimmylegs

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my approach: no meds so far - just balanced whole foods (partial 'paleo', much less outright elimination), science, supplements, & bloodwork
my regimen - www.thisisms.com/ftopict-2489.html
www.whfoods.com, www.nutritiondata.com

NiftyBunny, to your question:
I would suggest that the most important thing is to spend time with her, do not focus on what you CAN'T do. Share time with her doing the things you can do. Sit at the table with her as she draws or colors pictures; read to her as much as possible, and when she learns to read, sit with her and listen; talk to her about everything!

Of necessity, working parents must believe that "quality time" is more important than quantity of time. I think just the opposite: the amount of time you spend with your child – no matter if you are just watching the sunset – is more important.

I think she will be conscious of your condition simply by being with you. If you establish lines of communication, she will feel comfortable discussing her feelings all her life. Actually, you may be there for her more than other mommies. She may become more compassionate and caring BECAUSE of your situation – isn't that how we want all our children to become?

Follow your heart; pray for guidance.

By the way, you probably know that for many women MS symptoms improve during pregnancy and breast-feeding.