oddduck

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oddduck

Postby sunshine12 » Sun Sep 12, 2004 5:05 pm

hello,
i was just reading one of your replies on here, and noticed you said u have 3 children and 5 grandchildren, did any of your children end up with ms? i am asking because i you know all the supposed theories on getting ms, and some say it is genetic, and i have been worried, since i have 3 children, i was dx'ed after having them. and worry everyday that my children might have to go through what i am going through.
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Postby OddDuck » Mon Sep 13, 2004 10:25 am

Hi, Sunshine.

Frankly, I wouldn't worry overly much about whether your kids will develop MS or not. It really doesn't appear to be genetic or directly hereditary.

As for me. Well.........some things have drastically changed in recent months, hence why people haven't seen me much lately. To make a drastically long and boring story short, it appears that I may not have MS after all. It's looking less and less likely as time goes on. The thought now, is possibly a muscular dystrophy disease (and there is a lot of talk to me about ALS) or perhaps a mitochondrial syndrome (again genetic). I have an appointment with a new neuro at Vanderbilt on September 28th, so we should know more in upcoming months.

I hate to say it, but one of the reasons (among many others) which also turns my diagnosis away from MS toward something else, is precisely BECAUSE one of my sons HAS inherited this from me. He is almost a carbon copy and his symptoms are progressing also. But there are no sensory symptoms associated with what we have, leaving MS to be the least likely of them all at this point. All of his symptoms (on paper - he won't go to a doctor) are highly indicative of ALS, also, or an MD, or a genetic mitochondrial disease.

Remember, the strange thing about me (and my son) is that we both were BORN having this.

I'll know more soon.

But should you worry about your kids with MS? No. Not at all.

Hang in there!

Deb
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Postby sunshine12 » Mon Sep 13, 2004 10:33 am

wow, i am sorry to hear of all you are going through, i cant imagine getting told u have ms and dealing with that then suddenly have all of that yanked away and getting put back into the guessing game.i truely wish you and your son the best , and send you my prayers. please keep us informed as to what they say.
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Postby Shayk » Tue Sep 14, 2004 7:36 pm

Deb

Please do keep us posted on what happens with your next neuro visit. I'm really curious about the mitochondrial thing since that was a possibility for me but I opted not to have a biopsy 4 years ago. At that time a big caution with biopsies was that there were a lot of false negatives.

So, now that I have the MS diagnosis, I'm wondering if MS could be some sort of "mitochondrial myopathy" in the brain and spinal cord instead of the muscles. Do you (or anyone) know if that's a possibility?

On the desipramine research, another possibility would be for you to send it to the National Center for Depression and the MS Center at the University of Michigan. Maybe a university with specialty clinics in both disorders would have a keen interest in pursuing it, just an idea.

Do take care and thanks for checking back in with us.

Sharon
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Postby OddDuck » Sun Sep 26, 2004 7:07 am

Sharon,

I think you'll especially be interested in my posts that I did today.

I see I posted the above when I was feeling a little down. We have to remember, too, that the very last thing that my last neuro (Sam Hunter) and I BOTH said was that from here on out, if another neuro or doctor were to examine me, he'd be hard-pressed to find MS at all (due to the MS improvement from the drugs I'm on). I said to Sam "Oh, geez. I was afraid of that!!!!"

So, that's exactly what is happening, I think. They can't find MS, so they are thinking I must have been mis-diagnosed in the first place. I bounce back and forth, because just like Sam said, we can't "prove" a darn thing right now! And besides (as sort of indicated from my research posts today), if there IS a certain pattern of MS that DOES have a genetic/hereditary component to it, then that would explain why my son might have inherited my particular type of MS after all!

In any event, whether I have MS or not is irrelevent as it pertains to my research. The only way to find out if something works at all is with a clinical trial.

I'll let you know what Dr. Moses has to say next week. Probably nothing at first. LOL

Deb
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Postby OddDuck » Wed Sep 29, 2004 4:21 am

Well, folks, update on my visit to Vandy yesterday. I can't say too much, but the bottom line is that I'm sort of back in "limbo". At least that's the way I'm going to refer to it.

Frankly, what do we know? It's as I called it. They can find no signs of MS. As Sam and I predicted all along. I don't know, is it because my drug treatment works as I suspected, or because I don't have MS? There is, of course, conflicting opinions about my condition.

We'll never know unless we get the drug into clinical trial whether and/or how well it works for MS. But am I still on the same drugs? Yes. There was no problem with that.

In any event, taking me totally out of the picture altogether, my research alone stands by itself. And still justifies someone doing a clinical trial on it.

I left all my research with the Vandy guys. We talked about it, and they're reading it, etc. We'll see what feedback I eventually get.

Personally, what happens to me next is having an EMG done by them. That's a good thing anyway.

As far as anything else, as I suspected, nothing much else was said. I'd have to say everything is still as we know it. Basically "under continuing research".

At the very least I'll do some follow-up with Vandy. It's not over yet..........

Oh! And who was it who asked me about the mitochondrial connection? Well, mitochondrial was mentioned yesterday, hence why my son may be exhibiting the same type of symptoms as me. I don't believe, though, that they were making any connection between mitochondrial disease with MS. In their minds, it's two totally separate things. That sort of goes along with what I found in my research, also, anyway. It's just hard to explain, is all. When you get into genetics, it gets REAL complex then! HAH!

Deb
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Postby Gonzo » Mon Oct 04, 2004 10:24 am

I don't know if MS is hereditary but I have RRMS ans so does my mother. She had been told many years ago that MS could be hereditary and tended to from mother to son to daughter.

Which has a bit of a ring to it as I have two sisters who don't have MS.
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Postby OddDuck » Mon Oct 04, 2004 11:04 am

Yes, it's hard to say. They find that MS tends to "run" in families, but not that there is a direct hereditary "genetic" link. Yet, anyway. IF they ever find an exact "gene" that is screwed up, then they'll be able to connect the dots, as the saying goes.

I guess I shouldn't have said I'm in limbo previously. The fact is, I was told flat out:

You do NOT have MS. You do NOT have ALS. You will NEVER be disabled. You are NOT going to die! :lol:

I'll have my ups and downs periods (like I have always had my whole life), but what else is new, huh?

In any event, the meds I'm on help a whole range of neuro type diseases anyway, including MS, so even if I ever DID have it, I don't now. And if I never did have it, then the meds I'm on are still the right meds for everything I DO (or might) have. And besides, let's take the middle road........the way I put it is like this. The meds I'm on will help keep me well, and based on my research, will also thwart my "predisposition" to MS, too. So it's a win/win situation. :lol:

Deb
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