Aa
statement for Quix & LuLu
the va finally prescribed copaxone. gave myself my first shot last night. no problems. put ice on it for a few minutes afterwards.
all this time...i'm happy i have it and happy the va prescribed it though they still don't call it ms for me.
i have hope this helps. for now, it helps me knowing i'm fighting this with an objective tool and not vapor psychology.
just wanted to let you two know as both of you have been very supportaive and educational pillars.
ps: i can already see why people want pill form!! LOL
more later
all this time...i'm happy i have it and happy the va prescribed it though they still don't call it ms for me.
i have hope this helps. for now, it helps me knowing i'm fighting this with an objective tool and not vapor psychology.
just wanted to let you two know as both of you have been very supportaive and educational pillars.
ps: i can already see why people want pill form!! LOL
more later
thanks Shell & Quix, so much appreciation, i have no words for such things.
well Quix, ya never know. if i decide to do the web thing LuLu suggested i'll need more expert education. we'll see ...
well Quix, ya never know. if i decide to do the web thing LuLu suggested i'll need more expert education. we'll see ...
Thank you, I aprreciate your comments. I'm thrilled that the cowards at the VA prescribed the Copaxone. I would not ever expect them to acknowledge in so may words that they have been wrong for more than 20 years, but this is better than an empty acknowledgement. You have the meds, at last!
If you ever need me to support an assault on the VA citadel, you'll have me, but I'm afraid I would carry NO weight.
Congrats!
Quix
If you ever need me to support an assault on the VA citadel, you'll have me, but I'm afraid I would carry NO weight.
Congrats!
Quix
Woo hoo!!!!!
Nice to see you out on the other side of that mine field! So glad to read this today.
Congrats!
-shell
Nice to see you out on the other side of that mine field! So glad to read this today.
Congrats!
-shell
thanks meg.
they gave me a good pair of hearing aids too, that i could not have afforded. the ear doctors never did really find/diagnose as to why my hearing was going and my slow response to some sounds.
even with the aides i have a hard time hearing/understanding some conversations. but happy i got them.
i suspect it has something to do with the ms thing.
they gave me a good pair of hearing aids too, that i could not have afforded. the ear doctors never did really find/diagnose as to why my hearing was going and my slow response to some sounds.
even with the aides i have a hard time hearing/understanding some conversations. but happy i got them.
i suspect it has something to do with the ms thing.
That must be very frustrating for you. It always is when you are stuck with an HMO or the VA when they are not helping you.
Just wanted to say that my husband goes to the VA and in SF the VA drs. come from UCSF and that is a plus....they have been really great for him. They found something that he would not have known about ...closed angle glaucoma and has done surgery on his right eye already....he could have gone blind in an instant otherwise. And he got hearing aides too.....he is a happy camper !
Good luck, hugs, meg
Just wanted to say that my husband goes to the VA and in SF the VA drs. come from UCSF and that is a plus....they have been really great for him. They found something that he would not have known about ...closed angle glaucoma and has done surgery on his right eye already....he could have gone blind in an instant otherwise. And he got hearing aides too.....he is a happy camper !
Good luck, hugs, meg
you know my reluctance to publicity, though i will think about this.
yep sure, know of that logo. good luck with it.
will let you know ...
yep sure, know of that logo. good luck with it.
will let you know ...
I would really like to come up with a way to make your story public. Put some pressure on the VA system to get on your side instead of fighting you every step of the way.
Do you have any friends with a video camera? Or a tripod and your own camera? I am thinking a youtube production - with you talking about being denied the benefits you worked for. And all these years of frustration trying to get recognition for this life altering disease.
We could make it spread and help to push for action. All of us have local VA groups that would be happy to spread it too. give it some thought, ok?
I am very serious about this ... my daughter just suggested I *youtube* a mess we have encountered with the phone company that has the Death Star as its logo --- it has three initials and an ampersand in its name if that helps with a clue. I'm still thinking about it even if they do get my mess straightened out. It has been a 3 month saga so far and is still not resolved.
Anyway, she thinks this type of publicity is the key to budging those difficult organizations into doing the right thing. She might be right - social media is hot these days.
Please, please think about it. I'm here to help.
L
Do you have any friends with a video camera? Or a tripod and your own camera? I am thinking a youtube production - with you talking about being denied the benefits you worked for. And all these years of frustration trying to get recognition for this life altering disease.
We could make it spread and help to push for action. All of us have local VA groups that would be happy to spread it too. give it some thought, ok?
I am very serious about this ... my daughter just suggested I *youtube* a mess we have encountered with the phone company that has the Death Star as its logo --- it has three initials and an ampersand in its name if that helps with a clue. I'm still thinking about it even if they do get my mess straightened out. It has been a 3 month saga so far and is still not resolved.
Anyway, she thinks this type of publicity is the key to budging those difficult organizations into doing the right thing. She might be right - social media is hot these days.
Please, please think about it. I'm here to help.
L
Terry from Kentucky. a beautiful state. i used to know some of it well many years ago.
thanks for your kind thoughts. and here is to you and your successful outcomes.
a lot of great genuine support here
thanks for your kind thoughts. and here is to you and your successful outcomes.
a lot of great genuine support here
long post - beware -
>What the heck did I miss in the past two weeks or so?
nothing really.
>How did you get the VA budged off their no--dx duffs and actually prescribe copaxone for you?
i didn't do much. i did go and get assessments from two non-va board certified neuros. one on the east coast and one close to the west coast. both returned rrms. they had the same patient, me, the same data the va has. nothing different.
i told the local va neuro about it and he wanted to see it. said it might help him. i honestly thought he wanted to see them in order to help out. boy was i wrong. i guess someone got to him because he basically tossed the info away and only stated, "they have their opinion". he wrote nothing about them in his notes. so nothing changed. the other neuros did state i should be on an ABC asap. the local va neuro called then and asked, "did you not think we were going to start the copaxone?". i said, "yes, that is exactly what i thought". nothing more was mentioned. next visit he waited until i brought it up to start the copazone. he obviously was going to wait and see if i brought it up. kinda tried to talk me out of it too. like he was saying he wasn't sure i had ms that i was on the border and stuff. no matter what i brought up he was to counter it. so i finally had to say, "i want the copaxone and i want your ok". he gave it. but f!@#, why put someone through that?
forgot to add, when i went to see a one of the non-va doctors for a third opinion, honestly, one of there staff doing the intake told me, the patients they get from the VA are in the worst condition of any of their patients because the VA allows the symptoms to get so bad before they will do anything. i kid you not.
i say third opinion, because my second opinion was from the va ms specialist. you know, the guy who went from "demyelinating disease of cns", to "95% rrms", to "nothing is wrong", to "ADEM", to "CIS, but not CIS", to, "i wouldn't object to this patient being on a DMD, but this in no way constitutes a diagnosis of ms". i no longer see him. can anyone on planet earth blame me?
and by law, the VA doesn't have to grant a diagnosis, they do though have to treat the vet. which, finally they are, reluctantly so, and still putting the burden on me.
and yes, the local va neuro stated if i didn't like him/his work i was free to see someone else in his office. so i did. i have never been treated with such contempt as that doctor did me. so we now know without a doubt what is going on here.
>>Does that mean the VA has wiggled around that MS dx by giving you a CIS label? For brave fighting men, they sure have taken the cowardly way out.
not a CIS label or any label that i can see. heck the local va neuro is back writing about ADEM and stuff. we had already been through that in Aug and he dismissed it since i have had more than one documented "flare"/symptoms. the ms specialist he sent me to had brought up ADEM and anything else he could think of besides ms. sure looks like my local neuro is now spending some writing time taking up for the ms neuro who came up with the odd ADEM statements in the first place.
now i know for sure, they have no desire to grant any diagnosis and will not do so. i can only think they got together, taking up for one another's assessments, covering someone else's butt from the past, protecting the VA for mis-handling my condition, and tossing the wrenches into the disability arena.
they have zero desire to produce a diagnosis. if it were CIS they would have called it that and been done with it. if it truly were ADEM they would have stuck to that, i would think. my local neuro is either afraid to make the diagnosis of ms and/or the va bureaucrats have him doing this. maybe standard procedure for the VA, who knows.
it sure makes me look really bad when i go to the mental health clinic to seek help for mood issues and anger associated with a demyelinating disease when they don't see that in the records. the last session with the MH social worker, she writes "patient thinks he has ms". that is right, they again put the burden on my shoulders that i now am thinking i have ms. like i just thought this up or something. she can only see what the doctors write. how would that make anyone out there feel? angry? you think they do that on purpose or something.
i'll have to ask them to reword this stuff to correct it. and they don't have to either. a vet then has to get a patients advocate. i've called them in this town, and farting in the wind would do more good.
>...photos of the brain building.
well we must be on the same wave length today. that is cool. and that is one strange looking building, huh?
> It gives me hope that sailorsong may someday also get VA to help.
i sure hope so too. i have an abundance of empathy for him as i know what he is going through. the vertical climb through the VA rationing system is nothing short of a mine field.
>>Copax is my drug of choice too. Trust me it does get better -
i chose this when the va ms specialist called back in the spring, stated he was 95% sure i had rrms and was sending me literature to read and choose. so i chose copaxone. as you know, in june he pulled the plug and did an about face and basically said there was nothing wrong with me.
it doesn't matter really now. my whole goal from day one was to get the VA to quit telling me nothing was wrong, that i needed to see a shrink, and/or i was just getting older and didn't want to accept it.
in my early days of sobriety i believed them, and simply thought it was just my body adjusting to a new life style mentally and physically. but then i started to change in order to compensate for the myraid of symptoms that i denied most times as something else and believed whatever the VA was telling me. no more of that. too much validation from non-va professionals. disability was never on my mind, although it is now, due to my age and symptoms. also, veterans have legal rights too.
do you think the VA's backlog of claims is just a random act? do you think the shredding of medical evidence for veterans claims is just a random act? do you think the strange non-sensical medical assessments by these va doctors is a random act? do you think denying diagnosis is just a random act? do you think the va not requesting enough money for their budget was a random act? think about it.
>> Just stick with it and be a compliant patient :-)
sure thing!
>>Yipppee for you - this is definitely a win for the good guys.
the VA system is definitely the enemy for many. and there are tens' of thousands of vets who know this is true.
aren't there whistle blowers out there? i mean come on. how can you work there and watch this without saying something? when i worked for the gov there were protective laws for that. speak up man, help a vet.
>>You have made my day with this news - I'm not kidding, this has made me smile.
wish i could do more, you certainly helped me out way more. and i thank you for that.
>>I would do the snoopy dance, but that's Q's move so I'll have to find another way to celebrate.
hmmm, take a short video of that and put it on here. would be great!!!
keep dancin ... hope most of this answered most of your questions, if not, email me
>What the heck did I miss in the past two weeks or so?
nothing really.
>How did you get the VA budged off their no--dx duffs and actually prescribe copaxone for you?
i didn't do much. i did go and get assessments from two non-va board certified neuros. one on the east coast and one close to the west coast. both returned rrms. they had the same patient, me, the same data the va has. nothing different.
i told the local va neuro about it and he wanted to see it. said it might help him. i honestly thought he wanted to see them in order to help out. boy was i wrong. i guess someone got to him because he basically tossed the info away and only stated, "they have their opinion". he wrote nothing about them in his notes. so nothing changed. the other neuros did state i should be on an ABC asap. the local va neuro called then and asked, "did you not think we were going to start the copaxone?". i said, "yes, that is exactly what i thought". nothing more was mentioned. next visit he waited until i brought it up to start the copazone. he obviously was going to wait and see if i brought it up. kinda tried to talk me out of it too. like he was saying he wasn't sure i had ms that i was on the border and stuff. no matter what i brought up he was to counter it. so i finally had to say, "i want the copaxone and i want your ok". he gave it. but f!@#, why put someone through that?
forgot to add, when i went to see a one of the non-va doctors for a third opinion, honestly, one of there staff doing the intake told me, the patients they get from the VA are in the worst condition of any of their patients because the VA allows the symptoms to get so bad before they will do anything. i kid you not.
i say third opinion, because my second opinion was from the va ms specialist. you know, the guy who went from "demyelinating disease of cns", to "95% rrms", to "nothing is wrong", to "ADEM", to "CIS, but not CIS", to, "i wouldn't object to this patient being on a DMD, but this in no way constitutes a diagnosis of ms". i no longer see him. can anyone on planet earth blame me?
and by law, the VA doesn't have to grant a diagnosis, they do though have to treat the vet. which, finally they are, reluctantly so, and still putting the burden on me.
and yes, the local va neuro stated if i didn't like him/his work i was free to see someone else in his office. so i did. i have never been treated with such contempt as that doctor did me. so we now know without a doubt what is going on here.
>>Does that mean the VA has wiggled around that MS dx by giving you a CIS label? For brave fighting men, they sure have taken the cowardly way out.
not a CIS label or any label that i can see. heck the local va neuro is back writing about ADEM and stuff. we had already been through that in Aug and he dismissed it since i have had more than one documented "flare"/symptoms. the ms specialist he sent me to had brought up ADEM and anything else he could think of besides ms. sure looks like my local neuro is now spending some writing time taking up for the ms neuro who came up with the odd ADEM statements in the first place.
now i know for sure, they have no desire to grant any diagnosis and will not do so. i can only think they got together, taking up for one another's assessments, covering someone else's butt from the past, protecting the VA for mis-handling my condition, and tossing the wrenches into the disability arena.
they have zero desire to produce a diagnosis. if it were CIS they would have called it that and been done with it. if it truly were ADEM they would have stuck to that, i would think. my local neuro is either afraid to make the diagnosis of ms and/or the va bureaucrats have him doing this. maybe standard procedure for the VA, who knows.
it sure makes me look really bad when i go to the mental health clinic to seek help for mood issues and anger associated with a demyelinating disease when they don't see that in the records. the last session with the MH social worker, she writes "patient thinks he has ms". that is right, they again put the burden on my shoulders that i now am thinking i have ms. like i just thought this up or something. she can only see what the doctors write. how would that make anyone out there feel? angry? you think they do that on purpose or something.
i'll have to ask them to reword this stuff to correct it. and they don't have to either. a vet then has to get a patients advocate. i've called them in this town, and farting in the wind would do more good.
>...photos of the brain building.
well we must be on the same wave length today. that is cool. and that is one strange looking building, huh?
> It gives me hope that sailorsong may someday also get VA to help.
i sure hope so too. i have an abundance of empathy for him as i know what he is going through. the vertical climb through the VA rationing system is nothing short of a mine field.
>>Copax is my drug of choice too. Trust me it does get better -
i chose this when the va ms specialist called back in the spring, stated he was 95% sure i had rrms and was sending me literature to read and choose. so i chose copaxone. as you know, in june he pulled the plug and did an about face and basically said there was nothing wrong with me.
it doesn't matter really now. my whole goal from day one was to get the VA to quit telling me nothing was wrong, that i needed to see a shrink, and/or i was just getting older and didn't want to accept it.
in my early days of sobriety i believed them, and simply thought it was just my body adjusting to a new life style mentally and physically. but then i started to change in order to compensate for the myraid of symptoms that i denied most times as something else and believed whatever the VA was telling me. no more of that. too much validation from non-va professionals. disability was never on my mind, although it is now, due to my age and symptoms. also, veterans have legal rights too.
do you think the VA's backlog of claims is just a random act? do you think the shredding of medical evidence for veterans claims is just a random act? do you think the strange non-sensical medical assessments by these va doctors is a random act? do you think denying diagnosis is just a random act? do you think the va not requesting enough money for their budget was a random act? think about it.
>> Just stick with it and be a compliant patient :-)
sure thing!
>>Yipppee for you - this is definitely a win for the good guys.
the VA system is definitely the enemy for many. and there are tens' of thousands of vets who know this is true.
aren't there whistle blowers out there? i mean come on. how can you work there and watch this without saying something? when i worked for the gov there were protective laws for that. speak up man, help a vet.
>>You have made my day with this news - I'm not kidding, this has made me smile.
wish i could do more, you certainly helped me out way more. and i thank you for that.
>>I would do the snoopy dance, but that's Q's move so I'll have to find another way to celebrate.
hmmm, take a short video of that and put it on here. would be great!!!
keep dancin ... hope most of this answered most of your questions, if not, email me
What the heck did I miss in the past two weeks or so? How did you get the VA budged off their no--dx duffs and actually prescribe copaxone for you?
Does that mean the VA has wiggled around that MS dx by giving you a CIS label? For brave fighting men, they sure have taken the cowardly way out.
I have so many questions for you .... its funny but I was just thinking of you a few minutes ago when I was on my personal page and saw the photos of the brain building. I was going to drop you a note and when I came back here, there was your message.
I am so thrilled for you - well not thrilled that you have MS, but that your persistence paid off. It gives me hope that sailorsong may someday also get VA to help.
Copax is my drug of choice too. Trust me it does get better - about 6 months or so into it I stopped feeling my body protesting and now I just shoot myself. No reaction, no ice, no problem. I'm sure you will get to that point, too. Just stick with it and be a compliant patient :-)
Yipppee for you - this is definitely a win for the good guys. You have made my day with this news - I'm not kidding, this has made me smile. I would do the snoopy dance, but that's Q's move so I'll have to find another way to celebrate.
lots of hugs sent your way,
Lulu
Does that mean the VA has wiggled around that MS dx by giving you a CIS label? For brave fighting men, they sure have taken the cowardly way out.
I have so many questions for you .... its funny but I was just thinking of you a few minutes ago when I was on my personal page and saw the photos of the brain building. I was going to drop you a note and when I came back here, there was your message.
I am so thrilled for you - well not thrilled that you have MS, but that your persistence paid off. It gives me hope that sailorsong may someday also get VA to help.
Copax is my drug of choice too. Trust me it does get better - about 6 months or so into it I stopped feeling my body protesting and now I just shoot myself. No reaction, no ice, no problem. I'm sure you will get to that point, too. Just stick with it and be a compliant patient :-)
Yipppee for you - this is definitely a win for the good guys. You have made my day with this news - I'm not kidding, this has made me smile. I would do the snoopy dance, but that's Q's move so I'll have to find another way to celebrate.
lots of hugs sent your way,
Lulu
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