Passing This Disease On

[Kitty]

After my dx the first thing I thought of was "have I passed this stuff on to my kids?". My Neuro at the time tried to calm my fears by telling me that it really isn't something that can be "given" to anyone. I've started to question this.

My oldest son has had some pretty strange sx in the past several years. Nothing that has prevented him from working or doing whatever he wants to do.....but they all sound strangely familiar to me......and it's scary.

He's had the "phantom" feeling of something wet on his leg, cognitive issues like not being able to recall a word, and that thing when you bend your neck forward and have the feeling of vibration in your torso (see....I can't even recall the name of it myself! ).

I try not to be an alarmist about it but cannot help but think that there is something "brewing".....just like it was for me when I started having strange sx years and years before I was officially dx with MS. I had sx for probably a good 20 years before I had the "exacerbation from heck" that earned me my dx of MS.

Anyone else here worry that you might have passed on this terrible disease (unknowingly) to your children? Anyone already have a child that has been dx with MS and did the Neuro say it was an heriditary thing?

[kicker]

I think about it, but know there's nothing I can do and worry never helped anything. BUT every time the kids mention a discomfort my fear flares. Then I calm down as I realize - that's a cold or sleeping in the car aches during Senior Prank night.
I was 46 when DXed, a very healthy active kid and adult, but the worry flares up on occasion. When I feel down, I always think "but better me than one of my kids." I still want to keep them safe every moment but know life won't let me. Being a a Mom is hard enough, being a Mom with MS is really hard.

[mrsD]

I know it has to be worrying to you, and would be for me too and other mothers.

But all of those early signs could be a simple explanation. B12 deficiency or low levels. In fact B12 can mimic MS quite a bit in other ways too.

So you could get him some methyl form for Xmas, and ask him to use one a day on an empty stomach, and see if those feelings go away.

That "water pouring down the leg" feeling I HAVE and it comes from my MP.
Tight belts or tight pants, or sitting on back pocket wallet in males can cause this all by itself with no MS history.

That water feeling is common in neuropathies caused by many things.

[Kitty]

Thanks, MrsD. I currently take B12 in a liquid form.....the kind you put under your tongue and let sit for 30 seconds. It's 500 mcg per dose and I take 1 dropper full first thing in the A.M. on an empty stomach. I can't really tell it's helping me much (I've been taking it for my balance issues) but maybe I haven't taken it long enough. Can I take more than the recommended dosage?

I'm going to get DS some for Christmas!

[mrsD]

500mcg is not really enough. And if it is Cyano form and you can't convert it to active methylB12, (you wouldn't know this without a special DNA test), then it won't work.

I'd get the methyl form, 5mg daily on an empty stomach. Under the tongue is not really necessary.

B12 has to be absorbed passively in people with no intrinsic factor or some failure like that. 500mcg is not enough for those folks, since so little gets thru by passive absorption.

It is really not expensive. Puritan's pride now has it, and has those sales all the time! Methylcobalamin.

[Kitty]

Thanks, Mrsd. I just ordered some from Puritan's Pride. They were out of the 5,000 mcg microlozenges so I got the 1,000 mcg dosage. Both dosages say to take 1 microlozenge per day but will that be enough if it's just the 1,000 mcg? It's so confising to know how much to take. Plus, my DS is much larger than I am. He's about 6'2 and weighs about 225. Not fat but muscular. I'm about 5'7 (maybe 5'8) and weigh about 144.

[mrsD]

I must have bought them all up on the last sale! I stocked up for 6months! LOL

Start at 2mg and see what happens. The optic neuritis is the thing I worry about for you... low B12 gives a similar optic symptom.
When severe, it leads to blindness.

If your son eats meat, and seems robust in other ways, no numbness in the feet, or severe fatigue things like that,
1mg a day should be enough to start. Once rebuilt up, most don't need the 5mg ...1mg is enough. But without testing you don't really know where you or he is. But if he uses heartburn drugs every day, he could well be getting low, as those block B12 absorption from food.

It is non toxic and inexpensive and so people can do it themselves. Not much else exists that is this easy and cheap.

[Kitty]

Since I decided to hijack my own thread I thought I'd repost the original question! Thanks for your help, MrsD.

After my dx the first thing I thought of was "have I passed this stuff on to my kids?". My Neuro at the time tried to calm my fears by telling me that it really isn't something that can be "given" to anyone. I've started to question this.

My oldest son has had some pretty strange sx in the past several years. Nothing that has prevented him from working or doing whatever he wants to do.....but they all sound strangely familiar to me......and it's scary.

He's had the "phantom" feeling of something wet on his leg, cognitive issues like not being able to recall a word, and that thing when you bend your neck forward and have the feeling of vibration in your torso (see....I can't even recall the name of it myself! ).

I try not to be an alarmist about it but cannot help but think that there is something "brewing".....just like it was for me when I started having strange sx years and years before I was officially dx with MS. I had sx for probably a good 20 years before I had the "exacerbation from heck" that earned me my dx of MS.

Anyone else here worry that you might have passed on this terrible disease (unknowingly) to your children? Anyone already have a child that has been dx with MS and did the Neuro say it was an heriditary thing?

[SallyC]

Get him on a steady diet of LDN, right away!! It won't hurt, unless he's allergic and it could just save him from the MS getting a stranglehold.

My DD is on it and it's keeping hers at bay. She is still in MS deniel, but she calls me to renew her LDN and doesn't miss taking it..

Originally Posted by Kitty

After my dx the first thing I thought of was "have I passed this stuff on to my kids?". My Neuro at the time tried to calm my fears by telling me that it really isn't something that can be "given" to anyone. I've started to question this.

My oldest son has had some pretty strange sx in the past several years. Nothing that has prevented him from working or doing whatever he wants to do.....but they all sound strangely familiar to me......and it's scary.

He's had the "phantom" feeling of something wet on his leg, cognitive issues like not being able to recall a word, and that thing when you bend your neck forward and have the feeling of vibration in your torso (see....I can't even recall the name of it myself! ).

I try not to be an alarmist about it but cannot help but think that there is something "brewing".....just like it was for me when I started having strange sx years and years before I was officially dx with MS. I had sx for probably a good 20 years before I had the "exacerbation from heck" that earned me my dx of MS.

Anyone else here worry that you might have passed on this terrible disease (unknowingly) to your children? Anyone already have a child that has been dx with MS and did the Neuro say it was an heriditary thing?

[Kitty]

But your DD has a definite dx of MS, doesn't she, Sally?