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Post subject: Prayer/good thoughts request
 Posted: Feb 09, 2008 - 07:06 PM
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Joined: Sep 18, 2004
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I would like to ask for prayers and good wishes for Diana G. She has recently gotten the possible diagnosis of Olivo Ponto Cerebellar Degeneration, which is a possible case of spinal atrophy of the spinal cord and the cerebellar of the brain. It's a genetic disorder, and it's important that she get a definite answer. Unfortunately, the diagnostic tests are very cost prohibitive.
So, if you could keep Diana in your thoughts and prayers, I know she would appreciate it.
Thanks. |
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Posted: Feb 09, 2008 - 07:23 PM
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Just a hug from me, Diana.
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Post subject:
Posted: Feb 09, 2008 - 09:45 PM
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My prayers and a guardian angel for DianaG and her lovely family for the battles ahead. All love and well wishes, too.
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Post subject:
Posted: Feb 09, 2008 - 11:45 PM
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Joined: Feb 12, 2005
Posts: 14326
Location: Your daily life is your temple and your religion. Kahil Gibran
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| I will be praying for DianaG, her family, and her doctors. |
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Post subject:
Posted: Feb 10, 2008 - 01:56 AM
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Location: CA
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Done and on-going
.... and we need to help her get signed up to programs that will provide those tests for her and for her girls....
DAMMIT AMERICA !!!!
NO ONE IN THIS COUNTRY SHOULD HAVE TO GO WITHOUT HEALTHCARE !
Let's YELL until someone realises We NEED to TAKE CARE OF OUR OWN !!!
 Sorry...I get worked up sometimes... |
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Post subject:
Posted: Feb 10, 2008 - 03:35 AM
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Location: Outer Space ;)
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| littlestar wrote: | Done and on-going
.... and we need to help her get signed up to programs that will provide those tests for her and for her girls....
DAMMIT AMERICA !!!!
NO ONE IN THIS COUNTRY SHOULD HAVE TO GO WITHOUT HEALTHCARE !
Let's YELL until someone realises We NEED to TAKE CARE OF OUR OWN !!!
Sorry...I get worked up sometimes... |
I know...  (and done!)
If she does have it, is there any way to "cure" it?  |
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Posted: Feb 10, 2008 - 04:36 AM
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Joined: Oct 24, 2002
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Location: Corn country in Illinois
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no, there is no way to cure it.There can be therapies but no cure. it is very rare (Figures! ) and if I do have it, it's a pain in the arse.....
I have had problems walking, moving, cognitive confusion, incontinace , tremoring in my hands and feet when walking or holding things,and driving problems (timing and turning problems) and stuff for the past 3 years and it has gotten worse. As of my Dr visit last week, I can no longer drive untill they say I can.
I have done some research on this and there are about 10 diffrent variations. some are not as bad, some are fatal. I need to know as this is hereditary and we have a LOT of family health conditions . Samantha my youngest has the Charcot, which this disease ie related to.The DNA test for the Cerebellar and the Charcot Marie Tooth together is about $12,000. I can apply for assistance and have to qualify, but I have to pay the other 25% which would be about $3,083.72 within a 30 day period of the order being given. Medicaid which I am on won't pay for it and Athena Diagnostics wont accept it any way.
They think too now I could have an arthritus disorder which have collapsed the discs in my neck and are hitting the nerves in my neck, but they arent sure about that. THey called it Cervical Spondylosis and there is no cure for that except fusin of the spine and wearing a huge neck brace, and no way am I having that. One of my friends did and she has been in worse pain AFTER the surgery than before.
Mostly I need wisdom as they have suspended the tests for now and are going for an MRI on March 5th.
I am just misesrable and need help with this. The stress is unbelievable and I feel like I am caught between a rock and a hard place.
Your prayers are coveted and well heartfelt...
DianaG |
_________________
"Jesus said to her I am the Resurrection and the Life ..." John 11:25
"O Death where is thy sting?.... the Victory is thru Jesus Christ." I Cor. 15:54-56
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Post subject:
Posted: Feb 10, 2008 - 05:17 AM
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Joined: Feb 12, 2003
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Location: NSW -Australia
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Lets hope you get the best care there is 
My thoughts are with you.
a terrible burden.
Daisy |
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Last edited by daisydownunder on Feb 10, 2008 - 11:22 AM; edited 1 time in total
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Post subject:
Posted: Feb 10, 2008 - 08:46 AM
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Joined: Oct 24, 2002
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Location: Corn country in Illinois
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| littlestar wrote: | Done and on-going
.... and we need to help her get signed up to programs that will provide those tests for her and for her girls....
DAMMIT AMERICA !!!!
NO ONE IN THIS COUNTRY SHOULD HAVE TO GO WITHOUT HEALTHCARE !
Let's YELL until someone realises We NEED to TAKE CARE OF OUR OWN !!!
Sorry...I get worked up sometimes... |
Thank you Littlestar... 
Do you know any addresses I could write to in Washington to get some ones attention on this???
Or any place I can write on getting a grant for the tests I need done?
DianaG |
_________________
"Jesus said to her I am the Resurrection and the Life ..." John 11:25
"O Death where is thy sting?.... the Victory is thru Jesus Christ." I Cor. 15:54-56
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Posted: Feb 10, 2008 - 09:28 AM
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Joined: Oct 24, 2002
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Location: CA
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The first step...What is the biggest Hospital near you that has the Equipment to do the tests...then we center on the Physicians and check with the "Have a Heart group", "Doctors without Borders"...ya know, the ones that run everywhere else giving thousands in free care, but forget about locals....
I try direct contact myself and blatantly ask for assistance for others....I've never done it for myself....
Sometimes one gets put off, but then sometimes the Pharmacuetical Companies will lend a hand....
and WHY can't we contact Montell Williams?
Would you allow that?
If you want to email the numbers of agencies in your area
and give me permission to speak about your case...I'll call !!!!
I have been a Medical Liason for Elderly Assistance....age is the only difference here....I'd be happy to help...stress and worry just make your disease worse. |
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Posted: Feb 10, 2008 - 10:01 AM
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Location: Corn country in Illinois
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| littlestar wrote: | The first step...What is the biggest Hospital near you that has the Equipment to do the tests...then we center on the Physicians and check with the "Have a Heart group", "Doctors without Borders"...ya know, the ones that run everywhere else giving thousands in free care, but forget about locals....
I try direct contact myself and blatantly ask for assistance for others....I've never done it for myself....
Sometimes one gets put off, but then sometimes the Pharmacuetical Companies will lend a hand....
and WHY can't we contact Montell Williams?
Would you allow that?
If you want to email the numbers of agencies in your area
and give me permission to speak about your case...I'll call !!!!
I have been a Medical Liason for Elderly Assistance....age is the only difference here....I'd be happy to help...stress and worry just make your disease worse. |
Well for one thing, the Athena Diagnostics is the ONLY place in the US of A that does these tests. All the tests that are done to check DNA go there. In fact that's where Samantha's went when she was tested but she had insurance to cover hers from my ex husband.
There is really no drugs I can take as I don't handle side effects well. There really is no drug for this either.
None of the hospitals does the testing, they just do the blood draw.
the website is http://www.athenadiagnostics.com/content/index.jsp
I already talked to the billing dept and they told me all about thier policies and how they bill people. You have to pay the payment first before the blood is even drawn after they get the test order. I would have to be approved for finacial aid from them and then have the 25% of it paid tothem within 30 days of the order being sent to them. I told them that t hat is ridiculous and how are people like me going to get help for possibly serious diseases when we can't afford this? I dont think I even qualify for the rebate that people are getting? Why didn't they pass it to be for those who need it the most?
THen I feel bad when I can't get the money for myself to take care of myself and my kids. I've tried selling off some of my Trek and Star Wars stuff but got very little for it and didn't sell the rest. I am petrified that this is hereditary and my kids may pass it on tot hier kids if they have them.
I am also afraid that if I get the tests paid for some how, what if they come back negative? would all the money I saved up be for naught, but then Samanthas came back negative and she was still diagnosed with it. It is such a mess it is nerve racking and I am trying to keep the faith that God will do something for me some how as I have done what I can to see what is going on. I am getting somewhere but keep hitting roadblocks. An MRI is set up but it won't do much as I can't handle the dyes in it.
I'm sorry to spill it all out on here but I feel trapped ...
Half my family said to just forget it and go on as best I can but my kids need to know what they could be facing later in life as this hits as you go into your 40's and 50...some times earlier depending what one it is. And it is hereditary.
What would you guys do in this situation?I have thought of selling my car but my family said no as I may get it back later .My oldest will be driving soon and she will need a car but my bills are getting higher and we need to get caught up.
But, I'm going to get off here as I'm babbling here and I need to get to bed.
DianaG |
_________________
"Jesus said to her I am the Resurrection and the Life ..." John 11:25
"O Death where is thy sting?.... the Victory is thru Jesus Christ." I Cor. 15:54-56
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Post subject:
Posted: Feb 10, 2008 - 11:26 AM
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Location: CA
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I understand you and it's perfectly OK to vent...it is a serious and sometimes fatal disease.
Of course you must tell the girls...what if something were to happen and you couldn't tell them any longer....they need to know everything that you wish to be done for yourself...should you lose cognitive thought. OH HORRORS..I'm sorry...it doesn't seem very kind to speak of this, but you asked what would I DO in the situation.
So...it may sound trite or useless....but I say we contact Oprah and Montel....they are always giving to people in desperate situations and your part of the tests isn't that much, but you will need some funds to get by and get caught up...and Physical therapy as muscle weakness progresses.
I know what you are saying about the dyes, but in this situation...it is the only way to get a clear picture of the atrophy...and damnit, I know you are going to be ill afterward. Some of the therapies are why I was thinking Pharmacuetical Companies....
Damn, I'm just so Frustrated !!!!
As for the Tax rebate...If you file for 2007, whether you normally do or not, whether you have to pay taxes or not...the Lowest you would receive is $300 for yourself and $300 for each minor child...you may even qualify for $600, plus $ for girls...so that could be up to $1500 right there. This money is actually an advance on the next years tax refund, but if you aren't owed any...or they overpay you...you do not have to pay it back!!! |
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Post subject:
Posted: Feb 10, 2008 - 12:45 PM
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Location: Outer Space ;)
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I have a good deal of respect for Oprah myself! Maybe Paul can help hook you up? (just a thought)
(You don't have to pay it back?! Sweet!!! ) |
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Posted: Feb 10, 2008 - 01:57 PM
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Joined: Feb 12, 2003
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Location: NSW -Australia
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I watched Oprah last week while having lunch , and it had the big guy Moore, isn't it, his latest movie is or was, about the terrorist prisoners Gitmo and how they had the very best medical facilities money could buy and the best doctors etc. meanwhile these poor souls who helped for days at ground zero 9/11 are seriously ill with lung problems, and can not afford medical.
In other words Oprah was exposing the unfair way US medical care is dished out. She would be sympathetic to this cause I am sure:) even the guy Moore( yes I know most of you don't like him) I don't really know him:)
I just cant believe no one can help with the care needed here.
Daisy |
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Post subject:
Posted: Feb 10, 2008 - 03:38 PM
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Joined: Oct 24, 2002
Posts: 4472
Location: Outer Space ;)
Status: Offline
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| daisydownunder wrote: | I watched Oprah last week while having lunch , and it had the big guy Moore, isn't it, his latest movie is or was, about the terrorist prisoners Gitmo and how they had the very best medical facilities money could buy and the best doctors etc. meanwhile these poor souls who helped for days at ground zero 9/11 are seriously ill with lung problems, and can not afford medical.
In other words Oprah was exposing the unfair way US medical care is dished out. She would be sympathetic to this cause I am sure:) even the guy Moore( yes I know most of you don't like him) I don't really know him:)
I just cant believe no one can help with the care needed here.
Daisy |
Yes, Oprah would be a sympathetic ear I think.
People dislike Moore, b/c he has been caught skewing the facts to make his "points" seem all the more obvious and terrible tragedies. He's got a good idea (exposing corruption), but you can't do it if you aren't going to be completely truthful.
It's too bad, b/c we really could use more of that right now. |
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Posted: Feb 10, 2008 - 08:44 PM
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Another site I visit deals with autoimmune diseases. Several people from that site tried to contact Oprah to see if she would be willing to do a show about autoimmune blood issues. They never got any sort of answer whatsoever, so I am not too impressed with Oprah being interested in everyday people's problems.
One thought I had that I mentioned to Diana was the NIH. That's where all my and my son's DNA, etc., tests were done, and they covered everything. It doesn't look like they are currently doing a study on this exact problem, but maybe another study would be close enough for them to study it.
Also, there may be certain foundations or groups that deal with these type of disorders that could help. |
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Posted: Feb 10, 2008 - 08:46 PM
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Joined: Oct 24, 2002
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Location: Corn country in Illinois
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I have told the girls what is going on and about what could happen to me, and them if this tests come back positive.. I already had a will made up a long time ago but I need to have it modified for the girls. THey are upset that I could not be here in a few years, but I am not planning on going any where soon if it is Gods will I be here for the next 25 years.
I am already losing some short term memory, and having a hard time keeping my mind on what I am doing. I write down when I take my vitamins and when I need to go some where so I won't forget. My BC pill is on a blister pack so I know when I take that. I have to remind myself when to eat even tho I don't feel hungry. I can cook for the girls and at least I can do that with little difficulty. I am being forgetful in mailing stuff but most of my bills I have set up in a direct pay so it's already taken from my account each month and I don't have to worry about it.
I did call a couple of places and they took a payment off for next month to help me out and I am saving that money for my tests.
And no I can't take the MRI dyes, there are already law suits from people having severe reactions to them and having worse problems that they did before.
The tax rebate thing I don't pay taxes so I may not get it just being on SSI . Sammy gets SSI too as she is disabled but I don't know if we will or not. I just have to see. HOw would I even apply? Would I go to a tax place and have some one fill it out or check the system for me or w hat???
I was just listening to a sermon on the radio about how God fills our NEEDS for us and not our WANTS. Well, this is a NEED Lord! A BIG ONE.
All I ask is for grace and mercy in this hour of need and what to do to pay these bills off. Amen.
Well Sammy just got up and she's ready to eat and the carpet sharks want in thier play pen. These guys are so funny and we can count on a laugh from them. I couldn't believe all 5 of them stuffed them selves in a sleep sack I made for them and were all laying there sleeping in a huge furry pile.
Beary is the biggest ferret at 4 1/2 pounds and he flopped on top of every one. Bandit gave him what for and she is our tiniest and oldest one at 1 pound and being 3 and a half. Bandit knows when Samantha is having a pre siezure and lets us know but sitting still on Sammy's chest if Sammy has her out.
DianaG |
_________________
"Jesus said to her I am the Resurrection and the Life ..." John 11:25
"O Death where is thy sting?.... the Victory is thru Jesus Christ." I Cor. 15:54-56
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Post subject:
Posted: Feb 10, 2008 - 08:53 PM
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Joined: Sep 18, 2004
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Diana, sometimes the MRI can be done without the contrast agent. I don't blame you for not wanting it, I refused to have it done as well considering it has been linked to severe kidney problems and death. Also, the FDA has now issued their "black box warning" on the contrast agent, which is the strongest warning they have.
It's always best to be honest with the kids. I was glad that my son has the knowledge of what we have, and what the future may bring. I think it helps them prepare for their future, and helps them make decisions regarding their health.
I'm sorry about the memory problems. Some of that may be even worse because of the stress you are under. Just keep a notebook handy, and write everything down. I know it's a hassle, but I find if I don't do that, I forget to take my meds, etc. anymore.
The tests will be taken care of one way or another. God (and your friends) will see to that. Just do what you can, and enjoy your kids and little carpet sharks. |
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Posted: Feb 10, 2008 - 08:54 PM
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Joined: Oct 24, 2002
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Location: Corn country in Illinois
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| Cat wrote: | Another site I visit deals with autoimmune diseases. Several people from that site tried to contact Oprah to see if she would be willing to do a show about autoimmune blood issues. They never got any sort of answer whatsoever, so I am not too impressed with Oprah being interested in everyday people's problems.
One thought I had that I mentioned to Diana was the NIH. That's where all my and my son's DNA, etc., tests were done, and they covered everything. It doesn't look like they are currently doing a study on this exact problem, but maybe another study would be close enough for them to study it.
Also, there may be certain foundations or groups that deal with these type of disorders that could help. |
I went through that site for the NIH and it's very thorough in it's descriptions of the illnesses. I learned a lot form it but I didn't see anything being tested right now on there with my disorder so I'll have to wait.
The Charcot Marie tooth disorder place goes through the same DNA tersting as I am trying to get into so no help there. I wonder if there is any way I can find a grant to get help.
We will have to keep looking. I may c heck with my Dr here to see if she knows of anything for funding.
DianaG |
_________________
"Jesus said to her I am the Resurrection and the Life ..." John 11:25
"O Death where is thy sting?.... the Victory is thru Jesus Christ." I Cor. 15:54-56
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Post subject:
Posted: Feb 10, 2008 - 08:56 PM
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Joined: Sep 18, 2004
Posts: 7329
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| DianaG wrote: | | Cat wrote: | Another site I visit deals with autoimmune diseases. Several people from that site tried to contact Oprah to see if she would be willing to do a show about autoimmune blood issues. They never got any sort of answer whatsoever, so I am not too impressed with Oprah being interested in everyday people's problems.
One thought I had that I mentioned to Diana was the NIH. That's where all my and my son's DNA, etc., tests were done, and they covered everything. It doesn't look like they are currently doing a study on this exact problem, but maybe another study would be close enough for them to study it.
Also, there may be certain foundations or groups that deal with these type of disorders that could help. |
I went through that site for the NIH and it's very thorough in it's descriptions of the illnesses. I learned a lot form it but I didn't see anything being tested right now on there with my disorder so I'll have to wait.
The Charcot Marie tooth disorder place goes through the same DNA tersting as I am trying to get into so no help there. I wonder if there is any way I can find a grant to get help.
We will have to keep looking. I may c heck with my Dr here to see if she knows of anything for funding.
DianaG |
Diana, I have a contact at the NIH that I have talked to while doing my testing. I'll hunt down her e-mail addy, and send her a note asking her if she knows of any testing in this area.
It's a good idea to check with your doctor. I just know there has got to be some options out there. |
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Posted: Feb 10, 2008 - 09:02 PM
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Location: Corn country in Illinois
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| Cat wrote: | Diana, sometimes the MRI can be done without the contrast agent. I don't blame you for not wanting it, I refused to have it done as well considering it has been linked to severe kidney problems and death. Also, the FDA has now issued their "black box warning" on the contrast agent, which is the strongest warning they have.
It's always best to be honest with the kids. I was glad that my son has the knowledge of what we have, and what the future may bring. I think it helps them prepare for their future, and helps them make decisions regarding their health.
I'm sorry about the memory problems. Some of that may be even worse because of the stress you are under. Just keep a notebook handy, and write everything down. I know it's a hassle, but I find if I don't do that, I forget to take my meds, etc. anymore.
The tests will be taken care of one way or another. God (and your friends) will see to that. Just do what you can, and enjoy your kids and little carpet sharks. |
THanks Cat for that information as I am glad now I have had them write it on the order no dyes. THe Dr wasent happy but I have heard of people having severe reactions and even death. My mom went into have a test done for her eye in the hospital and the dye they gave her cause her to have a horrible reaction and she ended up in the ER having an anaphilactic reaction! TG she hadn't gone far from the hospital and my sister turned the car around and went back to the ER and saved her life. My sister said all of a sudden my Mom said she felt itchy and her chest felt funny. She looked at my Mom and she had a huge hive on her face and rec blotches on her arms.
The first thing my Mom said to me after they set up the MRI was DO NOT LET THEM GIVE YOU THE DYE!!!
DianaG |
_________________
"Jesus said to her I am the Resurrection and the Life ..." John 11:25
"O Death where is thy sting?.... the Victory is thru Jesus Christ." I Cor. 15:54-56
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Post subject:
Posted: Feb 11, 2008 - 01:01 AM
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Joined: Oct 24, 2002
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Location: CA
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OK...I get anaphylactic too ...NO DYES....
I just want a definative and concise diagnosis in the hopes that this
Specialist screwed up and it is not one of the worst strains of the disorder...
I hold out for Hope .....
The tax rebate does not require any special effort other than filing a tax
return by April 15th, whether you normally do or not, whether you normally pay taxes or not...it's a papertrail for you to be entered into the system for the automatic dispersal....and then they see how many children to add by the dependants you list...the SSI income counts....
See more info.... HERE
Tax filers who do not owe income taxes because of various credits and deductions but have at least $3,000 in income - which can include Social Security and disability payments - will get $300 rebates per person or $600 per couple.
In addition, parents will also receive $300 rebates per dependent child; there is no cap on the number of children eligible.
Another Article
Only drawback is... it may take til June-July for checks to go out. |
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Posted: Feb 11, 2008 - 01:09 AM
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Joined: Oct 24, 2002
Posts: 9322
Location: Corn country in Illinois
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| littlestar wrote: | OK...I get anaphylactic too ...NO DYES....
I just want a definative and concise diagnosis in the hopes that this
Specialist screwed up and it is not one of the worst strains of the disorder...
I hold out for Hope .....
The tax rebate does not require any special effort other than filing a tax
return by April 15th, whether you normally do or not, whether you normally pay taxes or not...it's a papertrail for you to be entered into the system for the automatic dispersal....and then they see how many children to add by the dependants you list...the SSI income counts....
See more info.... HERE
Tax filers who do not owe income taxes because of various credits and deductions but have at least $3,000 in income - which can include Social Security and disability payments - will get $300 rebates per person or $600 per couple.
In addition, parents will also receive $300 rebates per dependent child; there is no cap on the number of children eligible.
Another Article
Only drawback is... it may take til June-July for checks to go out. |
THe only other drawback is that I had signed a paper saying if I filed taxes that I cant have my kids be as dependants on my form due to my divorce. SO even if I can get the rebate my kids can't be put on there. I don't know if Sammy would get the rebate as she does get SSI but is a minor and not 18 yet so she can't file for it. It is in my name tho as her representative payee.
Well if i have to wait till then I will. The ladies at the petshop where I worked at said they would make up some donation cans and put them out at local buisnesses that they know will do it. Plus if I can recycle cans that would be put in an account at the bank.
Thank you for the information!
DianaG |
_________________
"Jesus said to her I am the Resurrection and the Life ..." John 11:25
"O Death where is thy sting?.... the Victory is thru Jesus Christ." I Cor. 15:54-56
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Post subject:
Posted: Feb 11, 2008 - 01:20 AM
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Location: Corn country in Illinois
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I just thought of something as Martin, my ex may not be able to get the rebate tho for the girls as he doesent have custody of them and they do not have overnight visitation. He can claim them as dependants on his taxes but Ihope he doesent have them on there for this rebate. He can't claim them as an EIC either and if he has I'm going to have him turned in.
DianaG |
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"Jesus said to her I am the Resurrection and the Life ..." John 11:25
"O Death where is thy sting?.... the Victory is thru Jesus Christ." I Cor. 15:54-56
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Post subject:
Posted: Feb 11, 2008 - 02:01 AM
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Member
Joined: Oct 24, 2002
Posts: 15102
Location: CA
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As I was reading your post above the last...I was thinking WHAT?
You signed WHAT?...when you have custody?
I would put them down....and maybe think about having that paper removed from the settlement...it isn't fair to you....
I mean how much child support is he sending for their upkeep all
these years?
Maybe call IRS about how to deal with the situation...call early,
but then half the time they give incorrect info out....
I don't see HOW he is allowed to write them down as dependants when he doesn't have custody...he can take support off his taxes, that's OK....
but the rest sounds fishy... |
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