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Yasmine Galenorn
November 9th, 2004, 01:55 PM
Okay, some of you know that my husband Samwise has been suffering from a neurological condition that they couldn't diagnose. Well, they've finally settled on a tentative diagnosis--tentative because the condition is a syndrome that is diagnosed by exclusion and so rare that only 1 in 10,000,000 (yep, that's right, one in ten million) people get it. So it's hard to say with absolute certainty "this is it" but he fits the profile, the symptoms, the progression, etc. We've pretty much accepted the diagnosis and are glad it isn't something far worse--he really does have the symptoms and the diagnosis makes sense. Nice to have a name for it, at least.

They're pretty sure he has PLS. Primary Lateral Sclerosis. It's an upper motor neuron disease that causes: lack of balance, muscle spasticity, dragging foot, muscle cramps, myoclonus, slurring of speech. It's not fatal, as far as they know--doesn't seemed to have shortened the lifespan of the people who have it but given the rare incidence, who knows? It's a rare variant of ALS but not nearly as devastating (thank the Lady). There is no cure, but as I said, it's not considered a fatal disease. There have been spontaneous remissions of some degrees, and most of the people with it don't end up in wheelchairs. He walks with a cane, but the doctors said they haven't seen much progression of the disease in the past year, a good thing. If you're for some reason interested in this condition, you can find out more about it here: http://www.emedicine.com/NEURO/topic324.htm

So...at least we have a name to give it. That helps us wrap our minds around it easier. Again, we ask that people NOT send Reiki to him or healing spells...he's doing okay and we don't want to exacerbate anything else. LOL...if you have yen to do anything like that, much better to ask that he find the best permanent job in software development that will be a good fit for him all the way around. Contract work with no insurance is getting old.

Anyway, thought you might want to know--a number of people have asked about the condition.

Yasmine :colorful:

LadyTrinity
November 9th, 2004, 01:59 PM
How are you hanging in there Yasmin hun?
I am sorta happy for you... not because of all the
BS that you have had to put up with but because now
there is a name to the illness and that is probably some
what helpful for you both. I am so so sorry that you have to
go through this.. more so your hubby because no one... I mean NO ONE deserves it.
:hugz: Im here, PM me anytime!
My energies are sent with this message. I hope things only get better.
Have you and your hubby try natural forms of therapy? such as acupuncture or the hot caps that drain body toxins?

Yasmine Galenorn
November 9th, 2004, 02:10 PM
How are you hanging in there Yasmin hun?
I am sorta happy for you... not because of all the
BS that you have had to put up with but because now
there is a name to the illness and that is probably some
what helpful for you both. I am so so sorry that you have to
go through this.. more so your hubby because no one... I mean NO ONE deserves it.
:hugz: Im here, PM me anytime!
My energies are sent with this message. I hope things only get better.
Have you and your hubby try natural forms of therapy? such as acupuncture or the hot caps that drain body toxins?

Oh, I'm fine...mainly just worn out with all the energy of the past week--election rot and such. So I'm isolating for a bit to get re-focused on my work and on things that make me happy.

We wouldn't pick going through this if we could choose...but as I said, it's not fatal and he can still work and do most things he likes. It would be different if he'd been a huge outdoor sports enthusiast or something, but his main sports love is weight lifting and he can do that using machines still (free weights are a lot more problematic now).

The alternatives really wouldn't affect the motor neurons...it's a weird glitch in the makeup of the brain that causes this...but we're grateful that it's not worse. We eat *very* healthy foods--mainly organic, and other stuff like that to keep our health up as much as possible.

Hugs to you, to, Trin...*smiles*

Yas

Lunacie
November 9th, 2004, 02:24 PM
I usually feel even a horrible answer is better than the wondering. Sorry it's not a great diagnosis, thankfully it's finally some diagnosis. Sending energy for the best possible outcome. And :hugz:

Yasmine Galenorn
November 9th, 2004, 02:26 PM
I usually feel even a horrible answer is better than the wondering. Sorry it's not a great diagnosis, thankfully it's finally some diagnosis. Sending energy for the best possible outcome. And :hugz:

Yeah, and it's not like this is a new development. They've been leaning toward it for awhile but needed to wait and see how it progressed. So we're not any worse off than we were last week when we were saying "We don't know exactly what's wrong..."

:hugz:
Yas

13thChylde
November 9th, 2004, 02:28 PM
I'm glad you have a name for it, and sad he has to have it.

We're waiting for results on my husband from a neurosurgeon as well, so I sort of know how it feels.

Best of luck to you guys :hugz:

Shanti
November 9th, 2004, 03:13 PM
Just a thought, when I found out my condition, I checked with The National Organisation of Rare deseases to see if it was there, because I couldnt find out much on it...and low and behold, there it was...your Hubby's condition might be there too!!

I got a lot of help from NORD in finding out about me!!! :)
Link (http://www.rarediseases.org/)

Yasmine Galenorn
November 9th, 2004, 03:18 PM
Just a thought, when I found out my condition, I checked with The National Organisation of Rare deseases to see if it was there, because I couldnt find out much on it...and low and behold, there it was...your Hubby's condition might be there too!!

I got a lot of help from NORD in finding out about me!!! :)
Link (http://www.rarediseases.org/)

Actually, yes it is listed at NORD! http://www.rarediseases.org/search/rdbdetail_abstract.html?disname=Primary%20Lateral%20Sclerosis

We will probably start looking around to see if there are any support groups, but man, you know, there are so few people with this worldwide. I almost have to laugh. Everything we do seems to defy the odds in one way or another.

Yas :colorful:

Aidron
November 9th, 2004, 05:04 PM
Amazing news! :yayhawaii

There's nothing more frightening than not knowing what something is when it is affecting you to such a severe degree, in my opinion. At least now the invisible menace has a name, and that alone I believe takes a bit of power away from something.

I'm glad to hear it has not progressed much either as of late. Hang in there and remission may just be around the corner! :bouncysmi

Since you are so averse to healing magic and reiki, have you considered regeneration magic? The goal is to provide energy for the body to regenerate and heal itself naturally, as opposed to you healing it directly and head on. It works on the same principal as if Sam himself were taking suppliments to help improve his immune system, you are essentially providing energy for his body to use as it needs. It can be tricky, but I've had great success with it in the past and tend to prefer it for this sticky situations like this. Of course, insurance would be great too, but this is just another option.

Boogins
November 9th, 2004, 05:11 PM
:hugz: It's always better to know. Glad there are some treatment options.

Yasmine Galenorn
November 9th, 2004, 05:31 PM
:hugz: It's always better to know. Glad there are some treatment options.

Well, it's not curable...but the best treatment is exercise, getting enough rest and good food, and just taking it in stride. Railing at the heavens won't help a damned bit. So we take what we're given and make it go further than anybody thought we could!

Hugs,
Yazza :colorful:

Yasmine Galenorn
November 9th, 2004, 05:33 PM
Amazing news! :yayhawaii.....Since you are so averse to healing magic and reiki, have you considered regeneration magic?

I'd have to think about it for awhile and ask Sam what he thought. We're cautious with spellwork on health. Luckily, my prosperity work usually seems pretty strong. And with insurance, then I can get my health care and be twice as strong to help out when needed. *smiles*

Hugs you chickie,
Yazzapanther

RevelRain
November 12th, 2004, 02:21 PM
Yasmine,

I just wanted to let you know that Iím happy to hear that theyíve identified your husbandís condition, and that I hope everything goes well for the both of you (in matters both health-wise and employment wise).

Be well,

Jay

Yasmine Galenorn
November 12th, 2004, 03:54 PM
Yasmine,

I just wanted to let you know that Iím happy to hear that theyíve identified your husbandís condition, and that I hope everything goes well for the both of you (in matters both health-wise and employment wise).

Be well,

Jay

Thanks, Jay. He should be okay--I mean, you learn to cope with disability and work with it, rather than against it. Since it's not fatal and the progression is very slow, we try not to let it be a focus of our lives. For one thing, we could all be dead tomorrow--could get hit by a bus, could get zapped by lightning, could get in a car wreck. So we enjoy today and plan for the future, but don't live in it.

Employment wise, he does have one opportunity right now for a permanent position at MS, and that would be fantastic. Contracting can be decent money, but the insurance situation and the uncertainty when the contracts run out and you're searching for a new one are just too much, considering all the factors in our lives. However, we've lived this way for five years and are still alive and better off than we were when we came up here by far, so we're not complaining too loudly.

Cheers, and thanks for the good thoughts. Always welcome! :caffeine:

Yazzapanther :colorful:

RevelRain
November 13th, 2004, 08:59 AM
Thanks, Jay. He should be okay--I mean, you learn to cope with disability and work with it, rather than against it. Since it's not fatal and the progression is very slow, we try not to let it be a focus of our lives. For one thing, we could all be dead tomorrow--could get hit by a bus, could get zapped by lightning, could get in a car wreck. So we enjoy today and plan for the future, but don't live in it.

Employment wise, he does have one opportunity right now for a permanent position at MS, and that would be fantastic. Contracting can be decent money, but the insurance situation and the uncertainty when the contracts run out and you're searching for a new one are just too much, considering all the factors in our lives. However, we've lived this way for five years and are still alive and better off than we were when we came up here by far, so we're not complaining too loudly.

Cheers, and thanks for the good thoughts. Always welcome! :caffeine:

Yazzapanther :colorful:

Yeah, my day job's as a contractor, but it's the other kind where the contract is long-term and I have insurance and everything. I don't think the money's quite as good, but there's a bit more stability and security (though in today's economy, you don't really know).

I hope everything works out for him with MS, and thank you for all the wonderful books ;).

Be well,

Jay

Yasmine Galenorn
November 13th, 2004, 01:47 PM
Yeah, my day job's as a contractor, but it's the other kind where the contract is long-term and I have insurance and everything. I don't think the money's quite as good, but there's a bit more stability and security (though in today's economy, you don't really know).

I hope everything works out for him with MS, and thank you for all the wonderful books ;).

Be well,

Jay

Computers, perchance? The money is good, though the cost of living here is expensive so it evens out...insurance is available but the premiums are way too high for what the contracting company offers. Contracts vary from a few months to a year long. He likes MS--been contracting there five years off and on, it's cutting edge technology and that's where his interest is.

And I'm glad you like the books. ~grins~ There are more coming (mysteries, that is, and hopefully in the future--suspense and magic realism).

Yazzapanther :colorful:

RevelRain
November 15th, 2004, 01:21 PM
Computers, perchance?
Yep, thatís the day job. Not exactly what I want to do with my life, but the moneyís hard to refuse. Some people really enjoy working in the computer industry, but itís just a job for me. It makes other things possible though.


The money is good, though the cost of living here is expensive so it evens out... Yeah, we live near DC, so I know what you mean. I pay three times as much for rent than my parents do for their mortgage in central Pennsylvania for a much larger house on a lot more land.


Contracts vary from a few months to a year long. Our companyís contract gets renewed annually, but the company hires us on as permanent staff, and Iíve been with the contract for the past three years. Supposedly the company would move me to another contract should this contract not be renewed, but Iím not about to hold my breathÖ


He likes MS--been contracting there five years off and on, it's cutting edge technology and that's where his interest is. Thatís awesome that he enjoys the work. It really helps, I think. I just look at my work as a way to finance doing other things.


And I'm glad you like the books. ~grins~ There are more coming (mysteries, that is, and hopefully in the future--suspense and magic realism). Sounds very cool. Iím always up for a good mystery ;).

Be well,

Jay

Yasmine Galenorn
November 19th, 2004, 08:50 PM
Okay chickies, have to rush. Got the rewrites on the first India Ink book and they're due by the end of the year, as is A Harvest of Bones. Once again, a working holiday season. Oh well, such is my life!

Hugs and will check back in next week at some point. Have a wonderful Thanksgiving.

Yazzapanther :colorful: