MS Update

I just wanted to let you know that I found out yesterday that I have Multiple Sclerosis. The exact cause of MS remains uncertain. It is currently thought to be an autoimmune disease, meaning that the body’s own immune system is attacking the myelin sheath surrounding the central nervous system as if it were a foreign body.

Approximately 350,000 Americans may have MS according to most estimates. The disease strikes women more often than men and typically is diagnosed between the ages of 20 and 40.

It is not contagious, or a hereditary condition. There does not seem to be one single gene which dictates whether or not a person will develop the disease, but rather a combination of genes which may make a person more susceptible to developing MS.

In my case, at this point in time, we have caught it really early, and it is not in any advanced state.

The doctor is of course recommending drug treatment, I’ve researched a bit online, and honestly can say I’m a bit leary. Drugs have some scary side effects, and right now seem to only have the purpose of putting off getting worse till later, as well as becoming ineffective after awhile.  I have seen a lot of information online regarding diet changes and how it has seemingly helped many people, and am currently leaning more that way, however I am writing this for two real reasons. The first is obviously to let you know what is going on, and the second is to ask for your help

I am really interested in speaking, or e-mailing, or having any kind of coorespondance with people that you might know that have/had to deal with MS.

I know what the doctor says, and I know what I am typically finding online as far as dietary changes, but I would really like to make contact with people who are living with this, and find out some more actual information.

If you know of anyone that would be willing to talk to me, I would like to use all the information I can get from real life people, and their experiences to help me make my decision regarding medicines or if I even want to go that route.

I have three small children still, and I want to be an active member of their life. Luckily I’m blessed with a very supportive husband. I know God will help us through this, and I really feel like that is why he is inspiring me to find out all that I can.  If you know of people willing to talk about this, please let me know.
Thank you!

5 thoughts on “MS Update”

  1. Hi Serina,

    First off, let me say I’m sorry you have to deal with this disease; it is overwhelming at first, but you’ll sort through not only the information on diet and medications, etc., but your feelings and those of your family. Thankfully you caught the MS early; the opportunity to impede, if not quite halt, its progress through diet and meds is terrific! The one thing you need to know is that this diagnosis is not sounding the death knell. However, it will be something that will challenge you and your family.

    My name is Kelly Donovan, and I’m 44 years old; I was diagnosed with MS on April 14, 1989. I was 24, a successful businessperson in the fine arts insurance industry, who woke up one morning and realized the entire left side of my body was completely numb. Since I could still walk, after a fashion, I went to work (I had a meeting to attend!) After the meeting, at my desk, my arm and legs were getting “sloppy” so I called my doctor, because this was annoying me. My dr. has known me since I was 12, so when he said, “Kelly get your butt in a cab and get to my office right now! You may have had a stroke!” I knew it was serious. After the exam, he then put me in a cab to go to something called an MRI (they were pretty new back then & loud and scary) Two days later, he called and gave me the news. I had barely heard of MS & now I had it.

    So here I am, 19 years later, w/relapse-remit MS; I officially “retired” from work at the age of 40, due not only to MS but also in conjunction w/2 other chronic conditions. Retired but not inactive 😉 I write (and have the rejection slips to prove it!), care for my mini-doxies (Q-Tip and Quincy) participate in online MS communities and try to volunteer at MS society functions as my health allows.

    Serina, the following are the words I wish someone had said to me on April 14, 1989:

    This is going to some difficult challenge for you but it isn’t the end of the world. It’s tough because it’s capricious, but only you can choose to prepare for it. Go to the National MS Society for solid information on ANYTHING MS. Develop a good relationship with your neurologist-see her/him every six months, even if there are no symptoms. Finally, gather a group of family and friends as a support group. These folks will hold your hand, celebrate your triumphs and lift you above the doldrums.

    So with that I will close, hoping this has helped in some way. If you wish to e-mail me, please feel free.

    Wishing you nothing but good days, happiness & blessings,

    Kelly Donovan

  2. Hi!
    Serina
    I was guided to your blog Thanks to Lisa at Brass and Ivory.
    From the photo I can see that you have a very nice family.

    I too am leery of drugs and their side effects.
    If you are interested in dietary changes might I suggest you do a bit of research on Vitamin D ? My own research indicates that one cause of MS is lack of sunshine, lack of vitamin D.
    Did you know more people born in May have MS than those born in November? They think it has to do with the longer your mother is pregnant during the winter,the less sun exposure she has. This results in lack of vitamin D. Also MS is prevalent in countries with long winters and less
    sunshine .

    I’m not saying it’s a cure or will control your MS, but it can’t hurt either.
    Hope that information helps .
    Best Wishes
    Carole

  3. Hi there,

    I also found your blog through Brass & Ivory (love that). I was diagnosed in 2005, and decided last year that I did not want to take MS meds anymore. I understand your concerns, and I have found for myself, that knowledge is power. The more I have learned about my MS (how it is affecting me) the more I have realized I should be on an MS therapy.

    I tried life without the MS medications and have had more damage done. So, I am going on Tysabri this month. I am very nervous about it but I am more firghtened of further damage to my nervous system.

    I have 3 kids too, ages 14, 11 and 5. 2 of them have special needs, but with a supportive husband, we are making it somehow.

    Hang in there. If you need to chat anytime, you can find me over at beingammey.wordpress.com.

    I take Vit D, B12 ( I am deficient) and Vitamin C. I have heard a lot about the benefits of taking Vit D.

    I was born end of April, great information Carol!

    Peace and blessings,

    Ammey

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