Tag Archives: Genetics

MS: Like Mother like Daughter

Like Mother like Daughter

Like Mother like Daughter

Oh God NO…say it ain’t so!

We’re going to a neurologist today for my daughter to be seen. I thought I was okay, but I’m not. My stomach is upset and I’m on the edge of imploding. I’m falling apart just writing this. I’m trying so hard not to.  I know if I do, I won’t be able to stop…ever. I’ll be in pieces (or puddles) when she needs me NOT to be.

Because of an episode of what could have been optic neuritis, she needs an MRI and blood work. I allow myself to hit a “low”. It’s okay for me to do this, I deserve it. I just need to be careful not to let anyone in my family see me there. I really hate what this disease is doing to my family and I hate that I brought it here. If I didn’t have this disease we wouldn’t have even considered it. We wouldn’t know what MS was. We would just assume her temporary loss of vision was a migraine, or maybe a concussion that resulted from a soccer play.

What don't you understand about...NO!

What don’t you understand about…NO!

What do I do?  The only thing I can. When MS is the hammer, everything is a nail.The Nail That Sticks Out the Most

Okay, I cannot stay here! It’s time to change the recorded message in my head, before it becomes permanent. If I’m gonna talk the talk, it’s time to walk the walk. I’ve advised young couples dealing with MS who are concerned about genetics that:

1. More than 80% of people with MS DO NOT have a first degree relative (parent or sibling).

2. Scientists now believe that a person is susceptible to multiple sclerosis only if they inherit an unlucky combination of numerous genes.

3. Risk for MS is also affected in part by a person’s ethnic background and other factors such as something environmental or a virus. A “perfect storm” has to occur for a person to develop MS. Several of the believed causes must intersect in a person. It is not known what those combinations might be. As a matter of fact, it is known to be not just one specific combination.

4.If caught early, and the young person has access to one of the disease modifying drugs, the nervous system might possibly be preserved until a cure is discovered. I believe that is right around the corner.

To make a long post, short, Dad and I took her back for the MRI review. We had to wait almost an hour for our Neurologist to show up, I was a nervous wreck. She walks into the exam room and my only thought is, “Oh God NO…say it ain’t so!” Then the Doctor says to our daughter…” You have a beautiful brain”.  I burst into tears 🙂

Thank you God!

Thank you God!

Thoughts and Comments: Does anyone in your family have MS?

Are you a parent? Do you worry that your children will also have MS?

Do you NOT have children because you worry about them having MS?

References:

National MS Society on Genetics

National MS Society on Disease Modifying Medications (PDF)

Mayo Clinic on Optic Neuritis

 

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Part 1:MS and Genetics“A Conversation with my Daughter”

Part 1: MS and Genetics

“A Conversation with my Daughter”
We were talking at the dinner table, my daughter and I when she said, “I think I’m going to have MS when I grow up.” Just like you might say, “Pass the salt.” What happened in my brain was akin to the World Trade Center being hit. I looked into her eyes for some hint of joking, there was none. I asked,” Honey, why do you say that?” Her response,”because I’ve had Optic Neuritis” That’s it! There goes the second tower and the fucking Pentagon! Who PUT such trash into my baby’s mouth?! I NEVER taught her those words! Why are they there?

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Part 3: MS and Genetics “A Conversation with You”

I posed a question in an MS forum that I frequent, “Would you like more information about MS and Genetics posted on my blog?” and the answer was a resounding, yes! There were 73 comments in total but the one that ultimately convinced me to post this was from a young woman who is 29, has MS and because of the uncertainty in regards to the Genetic research, is struggling with whether or not to have children.

I can only say: I am so sorry for your angst. I did not have the time to agonize over MS or genetics as one child was already here and I sat pregnant with the other when the diagnosis was given. I am grateful for that…just as I am grateful for being told that same day, that MS carried no threat to my children genetically.

Many years have passed since my diagnosis and many things have changed. There were no drugs available then. I had to be put on a waiting list for the first disease modifying drug that was being approved. Now there are several disease modifying drugs to choose from. And with just a little faltering, I have been on one of them the entire time. As a parent (and a partner in this with my husband) I felt a huge responsibility to do “my part” to fight this thing with all that was available to me. To keep it at bay for as long as possible, preserving my nervous system until something was discovered! Now there is stem cell research, and just as I am truly beginning to tire of the injections, oral medications are becoming available. There is much to be hopeful for.

That baby, the one with all of my MS tainted genes, got my good ones too, and her Dad’s as well. Be very selective when you chose the Dad! He could bring genes a lot worse than MS. So far she’s been a girl scout, an Honor student and a Drum Major, now she’s in college. When I start to walk “drunk” she’s at my side in seconds holding my hand to steady me and we always laugh.  Imagine that, my teenage daughter holding my hand…in public!

Yes…I am sorry for your angst, but I am happy for your out look. Your unborn baby’s future is bright.

Maybe she’ll even hold your hand.

 

 

 

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Future Generations Could Be Stripped of Mutations

Human genetic modification experiment in Oregon shows promise, risks, experts say

For all MSers and those who care and are interested in the genetics of MS and other related diseases this is a MUST- READ. The link can be found on my MS and Genetics Info list to the right. I’ll post new info as it breaks!

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