Hi there,

I was told by my neurologist to get Ampyra, an old drug (4AP) re-worked with a time-release formula to make it new, because it would help my walk.. 4AP is made at compounding pharmacies, and I guess the strength of the drug was hit or
miss in the past. 4AP didn't get the same positive results in testing that Ampyra received, probably for that reason.

The difference in price between the two drugs is quite noticable.. Ampyra will cost Aetna over $1000 a month if not more. 4AP was about $25-30 a month from what I understand.

My doc sent in the paperwork required. The insurance company rejected the claim.

What fun, and what else is new.. geez.

So I called Aetna to find out WHY???

The representative told me, it was simple. I had to be on one of the CRAB drugs (like copaxone, beta-seron, etc., etc.) in order to qualify for the drug (their policy).

However... with the type of MS that I have, there is not a neurologist on earth
who will put me on those drugs, because they don't work with this type of MS :)
:)

I guess the insurace company wanted me to spend more of their money with the CRAB drugs, and maybe make myself sicker as well <g>.

SURE, we don't need a universal health care plan in the US ... Lol Though I'd settle for getting rid of the insurance companies :)

My doc has appealed Aetna's decision, and from what I understand, his letter to
them was quite angry.

I'm sure the whole thing is going to boil down to delay, delay, delay.. and their hope that if they reject the claim most patients won't go to the trouble I did in calling them, and my Dr.'s office.

Take care,
Janis

--- BBBS/LiI v4.01 Flag
* Origin: Prism bbs (1:261/38)

Hello Janis!

<On 07May2010 16:04 Janis Kracht (1:261/38) wrote a message to All regarding Had to expect this one Lol >

My doc sent in the paperwork required. The insurance company
rejected the claim.

Did you expect anything else? <g>

[snip]

I'm sure the whole thing is going to boil down to delay, delay,
delay.. and their hope that if they reject the claim most patients
won't go to the trouble I did in calling them, and my Dr.'s office.

Everyone connected with insurance companies should be sent to a concentration camp in Siberia for life. (Hopefully a _very_ short one at that.)

Best regards,
Marc
Telnet://bbs.sursum-corda.com

--- timEd 1.10.y2k+
* Origin: Sursum Corda! BBS SysOp Point (1:396/45.1)

Hi Marc!

<On 07May2010 16:04 Janis Kracht (1:261/38) wrote a message to All regarding Had to expect this one Lol >

My doc sent in the paperwork required. The insurance company
rejected the claim.

Did you expect anything else? <g>

hahahaha.. at least it's good for a laugh <grin>

[snip]

I'm sure the whole thing is going to boil down to delay, delay,
delay.. and their hope that if they reject the claim most patients
won't go to the trouble I did in calling them, and my Dr.'s office.

Everyone connected with insurance companies should be sent to a concentration camp in Siberia for life. (Hopefully a _very_ short one at that.)

Indeed :) Well, in the cooking echo I posted the results of this encounter with Aetna, not sure if you caught that. It's been shipped to me, should be here tomorrow afternoon. I had to battle Aetna over the copay amount since the
woman I spoke with at the company that makes Ampyra told me to make sure I only
paid a $40.00 copay.. and of course Aetna's rep tried to tell me it was
$50.00 :)

Ah well.. it better work after all this nonsense <vbg>

Take care,
Janis

--- BBBS/LiI v4.01 Flag
* Origin: Prism bbs (1:261/38)

Hi Janis,

Friday June 04 2010 19:47, Janis Kracht wrote to Marc Lewis:

Ah well.. it better work after all this nonsense <vbg>

I've learned in the past to *not* hold my breath when it comes to problems, it just makes me turn purple.

Good luck with things Janis, (don't hold your breath tho)

Kevin

--- Squish/386 v1.11
* Origin: This unit must survive! (1:342/77)

Hi Kevin,

Friday June 04 2010 19:47, Janis Kracht wrote to Marc Lewis:

Ah well.. it better work after all this nonsense <vbg>

I've learned in the past to *not* hold my breath when it comes to problems, it
just makes me turn purple.

Very true :) well, from what I've read it takes about 4 days to really see a difference. This was day 2.

Good luck with things Janis, (don't hold your breath tho)

Thanks Kevin, and I don't think I could <grin>

Take care,
Janis

--- BBBS/LiI v4.01 Flag
* Origin: Prism bbs (1:261/38)

Hi Janis,

Very true :) well, from what I've read it takes about 4
days to really see a difference. This was day 2.

« there...

Keep the fath!

Kevin
klement@gypsy-designs.com

... Murphy was right. Too bad no one can prove it.
--- Squish/386 v1.11
* Origin: Gypsy BBS -- Gypsy Designs CDN (403) 242-3221 (1:342/77)

Hi Kevin,

Very true :) well, from what I've read it takes about 4
days to really see a difference. This was day 2.

½ there...

It's working :) I can't run a race but it's working well.

Maybe it will continue to do better the longer I take it... it did improve "daily" if you know what I mean :)

Take care,
Janis

--- BBBS/LiI v4.01 Flag
* Origin: Prism bbs (1:261/38)

Hi Janis,

Friday June 25 2010 21:46, Janis Kracht wrote to Kevin Klement:

It's working :) I can't run a race but it's working well.

SUPER! thats good news hu. Every little bit helps. :)

Say, Janis, do you think your arteries (sp) are constrained in your neck?

Kevin

--- Squish/386 v1.11
* Origin: My other computer is a 486! (1:342/77)

Hi Kevin,

It's working :) I can't run a race but it's working well.

SUPER! thats good news hu. Every little bit helps. :)

No kidding. I was walking around with 'lead legs'. Very strange stuff, don't know how it works. I'll have to check it out since I'm curious <g>

Say, Janis, do you think your arteries (sp) are constrained in your neck?

Are you referring to the new treatment for CCSVI (Chronic cerebrospinal venous insufficiency)?

I don't know, but I was thinking of asking my doc to order a scan or whaterver.. CCSVI is a really scary proceedure. Think I'd wait until any kinks
are worked out before I let anyone play with my jugler vein and put a stent in there (lol)
Take care,
Janis

--- BBBS/LiI v4.01 Flag
* Origin: Prism bbs (1:261/38)

Hi Janis,

Tuesday June 29 2010 22:08, Janis Kracht wrote to Kevin Klement:

Are you referring to the new treatment for CCSVI (Chronic
cerebrospinal venous insufficiency)?

Yep. Sounds promising hu, like we said every bit helps. I didn't even know you have MS, but you mentioned it in another message.

Think I'd wait until any kinks are worked out before I let
anyone play with my jugler vein and put a stent in there

Can't blame ya, It's not approved here in Canada, Canada said more research is needed.

Kevin

--- Squish/386 v1.11
* Origin: This unit must survive! (1:342/77)

Hi Kevin,

Are you referring to the new treatment for CCSVI (Chronic
cerebrospinal venous insufficiency)?

Yep. Sounds promising hu, like we said every bit helps.

It's almost one of those things you feel is too good to be true.. :) Well time
will tell.

I didn't even know you
have MS, but you mentioned it in another message.

Oh yeah, I've had it for 35 years now.. You couldn't tell by looking at me, unless I'm having a darn bad day and limping some. In general, I must have had the easiest ride with this than anyone I know, though my doctors always tell me
that "most MS patients have it like you do". There are some rough cases, I had
two friends of mine from high school killed in their late 20's from it.

Think I'd wait until any kinks are worked out before I let
anyone play with my jugler vein and put a stent in there

Can't blame ya, It's not approved here in Canada, Canada said more research is
needed.

Yeah, but you guys up there are at least looking at it :) Over here in the states, there has been one hospital/university looking at it (Buffalo, I think). And if I'm not mistaken, they halted research when a couple people died during the surgery or something.

Take care,
Janis

--- BBBS/LiI v4.01 Flag
* Origin: Prism bbs (1:261/38)

Hello Janis!

<On 01Jul2010 18:18 Janis Kracht (1:261/38) wrote a message to Kevin Klement regarding Re: Had to expect this one Lol >

[snip]

I didn't even know you
have MS, but you mentioned it in another message.

Oh yeah, I've had it for 35 years now.. You couldn't tell by
looking at me, unless I'm having a darn bad day and limping some.
In general, I must have had the easiest ride with this than anyone
I know, though my doctors always tell me that "most MS patients
have it like you do". There are some rough cases, I had two
friends of mine from high school killed in their late 20's from it.

One of my very good friends was put down by MS after only 9 or 10 years. She suffered horribly. (Hate to even think about it.) You sound like you're one of the more fortunate ones. I can only hope and pray that it will remain under reasonable control for you.

I myself am truly blessed - I've had Type 1 diabetes (insulin dependent) essentially since birth and discovered when I was 3 - that was 58 years ago. Albeit a bit brittle at times, I've managed to keep my eyes in good condition and have had only minor involment with the various neuopathies that tend to plague many other diabetics. Kidney function still execelent, etc., so I really _do_ consider myself blessed in many respects.

I can only hope that the new drug you're using will prove to be a great benefit, Janis.

Best regards,
Marc
Telnet://bbs.sursum-corda.com

... Early to bed and early to rise, 'til I make enough to do otherwise.
--- timEd 1.10.y2k+
* Origin: Sursum Corda! BBS SysOp Point (1:396/45.1)

Hi Janis,

Thursday July 01 2010 18:18, Janis Kracht wrote to Kevin Klement:

> Oh yeah, I've had it for 35 years now.. You couldn't tell by

looking at me, unless I'm having a darn bad day and limping

35 years hu... long time. ITS still got to be hard not knowing from day to day. By the same token modern medicine has come a long way in 35 years and MS folk do better now. Like CCSVI is something new, some MS folk say it's made a world of difference. My be medicine can do something for SCI too, I'm stable so anything new in that would be nothing for me.

if I'm not mistaken, they halted research when a couple
people died during the surgery or something.

No... ouch. It needs research then!

Kevin

--- Squish/386 v1.11
* Origin: This unit must survive! (1:342/77)

Hi Marc!

Oh yeah, I've had it for 35 years now.. You couldn't tell by
looking at me, unless I'm having a darn bad day and limping some.
In general, I must have had the easiest ride with this than anyone
I know, though my doctors always tell me that "most MS patients
have it like you do". There are some rough cases, I had two
friends of mine from high school killed in their late 20's from it.

One of my very good friends was put down by MS after only 9 or 10 years. She

Yeah, that's another plateau I was glad to see pass.. I read too much Lol.. but
I wanted to know what I was up against. So, anyway, as I got past each plateau
as they called it, I was a happy camper. Those plateaus are at 10, 20 and 30 years IIRC.

suffered horribly. (Hate to even think about it.)

I know what you mean there..It can be so rough for loved ones and friends who can't do much to help.. except be there for the person... and that is really important to those with MS.

You sound like you're one
of the more fortunate ones. I can only hope and pray that it will remain under
reasonable control for you.

Yeah, I don't let it get in my way too often <grin>. A lot of that though I have to admit is Ron's 'fault' <bg>. When I was particulary bad (in the beginning was the worst) he made sure he was right there.

I myself am truly blessed - I've had Type 1 diabetes (insulin dependent) essentially since birth and discovered when I was 3 - that was 58 years ago.

That's a rough one :( I truly don't think I could be a good patient with that.. My father-in-law also had diabetes as does my mom, and neither of them would ever eat right, which was so hard to do. I'm sure if I'd ever develop it, I would have a very rough time with the diabetic diet.

Albeit a bit brittle at times, I've managed to keep my eyes in good condition and have had only minor involment with the various neuopathies that tend to plague many other diabetics. Kidney function still execelent, etc., so I really _do_ consider myself blessed in many respects.

I am so glad to hear that Marc.

I can only hope that the new drug you're using will prove to be a great benefit, Janis.

It is a great drug so far.. minimal side-effects that I've seen.. one of them is that some small percentage of people taking the drug had an increase in other MS symptoms.. not here, thankfully.

Take care,
Janis

--- BBBS/LiI v4.01 Flag
* Origin: Prism bbs (1:261/38)

Hi Kevin!

Oh yeah, I've had it for 35 years now.. You couldn't tell by
looking at me, unless I'm having a darn bad day and limping

35 years hu... long time. ITS still got to be hard not knowing from day to day.

It can be rough, but you have to adjust how you live... If you want to live <grin>. One of the first things I did when I got this little beast was to have a talk with Ron, my hubby, and the kids as time went on.. we established some new 'rules' in the house.. "If it bothers you, YOU clean it up" <grin>.

That worked until the kids were teenagers, then I had to add a little addendum:
"....unless you're a teenager, then YOU clean it" <vbg>


That idea works for us still <grin>. Also important was keeping active - so I couldn't dance so well anymore (and I was one of those people who really really
loved it <g>), but I could program computers :) Amazing the things one is able
to accomplish when other doors are shut closed on you.

By the same token modern medicine has come a long way in 35 years and MS

I think that the most helpful thing for people with MS is having stress reduced
to a minimum.. One really does need to learn to just shake off the 'agitia', that people run into in everyday life. That's probably just generally true though :)

folk do better now. Like CCSVI is something new, some MS folk say it's made a world of difference. My be medicine can do something for SCI too, I'm stable so anything new in that would be nothing for me.

Understand. Glad things are stable! How long have you had this? I expect it wasn't easy for you.

if I'm not mistaken, they halted research when a couple
people died during the surgery or something.

No... ouch. It needs research then!

Oh yes, indeed. IIRC, Buffalo University is again beginning such trials now. Canada is also funding research I believe.

Take care,
Janis

--- BBBS/LiI v4.01 Flag
* Origin: Prism bbs (1:261/38)

Hi Janis,

That idea works for us still <grin>. Also important was
keeping active - so I couldn't dance so well anymore (and I

Home life IMHO is the biggest challenge, when things go wrong in people's life *some* not all people run for the hills. They find it easer just not to deal with it, some take bad news fine. I'm glad your support took the news fine.

Dancing eh.. sweet. I bet you had the moves eh.. Hubahuba :)

What do I mean??? YOU still DO!

I think that the most helpful thing for people with MS is
having stress reduced to a minimum.. One really does need to
learn to just shake off the 'agitia', that people run into

Sure.. attitude works well, but it's not worth a bag of beans if your support don't care, then it's up to the person to make a life for him/her self.

Understand. Glad things are stable! How long have you had
this? I expect it wasn't easy for you.

I broke my neck in the early 80's C3 fracture. SCI (Spinal cord injury) MVA (motor vehicle accident) motorcycle accident.. It's wasn't a walk in the park, thats for sure, but I was always pretty independent, so I've made it over 20+ years now in my bucket (wheel chair) I have my own town house, live alone, financially stable, and hansom. <grin>

chat soon..

Kevin

--- Squish/386 v1.11
* Origin: This unit must survive! (1:342/77)

Hi Kevin,

That idea works for us still <grin>. Also important was
keeping active - so I couldn't dance so well anymore (and I

Home life IMHO is the biggest challenge, when things go wrong in people's life
*some* not all people run for the hills. They find it easer just not to deal with it, some take bad news fine. I'm glad your support took the news fine.

Heh, so was I.. The first neurologist told me that so many people got divorced after such a diagnosis.. Ron and I just ignored that one <grin>

Dancing eh.. sweet. I bet you had the moves eh.. Hubahuba :)

:) Yep, I took after my Dad. He was an incredible dancer. Mom was no slouch though.. she kept up with him :)

What do I mean??? YOU still DO!

hahahahaha :) Well, I do want to try it now with ampyra Lol - because the last time Ron took me out dancing was when we were in Louisville so that's almost 8 years ago or something :) One of the pictures of me on my site at filegate.net (pdnlady) is from that night we went out dancing all night <grin>

I think that the most helpful thing for people with MS is
having stress reduced to a minimum.. One really does need to
learn to just shake off the 'agitia', that people run into

Sure.. attitude works well, but it's not worth a bag of beans if your support don't care, then it's up to the person to make a life for him/her self.

Definitely. Sometimes people ask me 'how did you deal with this' or that throughout all these years.. well, you just deal. Because you have to. :) Besides, I can be pretty stubborn (eh.. hard-headed Italian? <laugh>)

Understand. Glad things are stable! How long have you had
this? I expect it wasn't easy for you.

I broke my neck in the early 80's C3 fracture. SCI (Spinal cord injury) MVA

Damn..

(motor vehicle accident) motorcycle accident.. It's wasn't a walk in the park,
thats for sure,

I bet..

but I was always pretty independent, so I've made it over 20+
years now in my bucket (wheel chair) I have my own town house, live alone, financially stable, and hansom. <grin>

:) :)

Glad to see another survivor. That's what you need to be no matter what happens in this world.

chat soon..

Sounds good :)

Take care,
Janis

--- BBBS/LiI v4.01 Flag
* Origin: Prism bbs (1:261/38)

Hi Janis,

deal. Because you have to. :) Besides, I can be pretty
stubborn (eh.. hard-headed Italian? <laugh>)

Italian.. egads... may be it's the garlic eh?

Your chatting with a Hungarian (me)

Kevin

--- Squish/386 v1.11
* Origin: This unit must survive! (1:342/77)

Hi Kevin,

deal. Because you have to. :) Besides, I can be pretty
stubborn (eh.. hard-headed Italian? <laugh>)

Italian.. egads... may be it's the garlic eh?

Lol.. doubt it :) More likely hard-headed Sicilians on Dad's side.. Mom's side
is Northern Italian <grin> Wish I could have seen the day Dad proposed to Mom... from what they tell me, Grandpa met Dad outside with a shot gun.. Those Northern Italians did not like Sicilians <laugh>.

Your chatting with a Hungarian (me)

Neat.. were your parents from there or your grandparents? For us, it was grandparents on both sides coming from Italy.

Love to get there someday :)

Take care,
Janis

--- BBBS/LiI v4.01 Flag
* Origin: Prism bbs (1:261/38)

Hi Janis,

Wednesday July 14 2010 15:36, Janis Kracht wrote to Kevin Klement:

could have seen the day Dad proposed to Mom... from what
they tell me, Grandpa met Dad outside with a shot gun..

A SHOT GUN.. egads... Marry me or-else!

Are you back now?

Neat.. were your parents from there or your grandparents?

My grandparents came from Hungry.

Type soon...

Kevin
klement@gypsy-designs.com

... The hidden flaw never remains hidden.
--- Squish/386 v1.11
* Origin: Gypsy BBS -- Gypsy Designs CDN (403) 242-3221 (1:342/77)

Hi Kevin,

could have seen the day Dad proposed to Mom... from what
they tell me, Grandpa met Dad outside with a shot gun..

A SHOT GUN.. egads... Marry me or-else!

Nope.. Grandpa was from Northern Italy, grandma from VERY northern Italy (Florence).. Dad was Sicilian.. considered worse than dirt by norther Italians <grin> but oh was he a handsome guy. My aunts sent me some pictures of him in the navy, incredibly good looking fellow.

Are you back now?

Yep, system (or should I say, weather) obeyed <grin>

Neat.. were your parents from there or your grandparents?

My grandparents came from Hungry.

Same here - grandparents from Italy.

Take care,
Janis

--- BBBS/LiI v4.01 Flag
* Origin: Prism bbs (1:261/38)

Hi Janis,

Nope.. Grandpa was from Northern Italy, grandma from VERY
northern Italy (Florence).. Dad was Sicilian.. considered
worse than dirt by norther Italians <grin> but oh was he a

Ah... those Men eh!

I'm a Man too! Assertive, not aggressive... :)

navy, incredibly good looking fellow.

Me too.. (ya right)

Same here - grandparents from Italy.

Right on.

Kevin

--- Squish/386 v1.11
* Origin: This unit must survive! (1:342/77)

Hi Kevin,

Nope.. Grandpa was from Northern Italy, grandma from VERY
northern Italy (Florence).. Dad was Sicilian.. considered
worse than dirt by norther Italians <grin> but oh was he a

Ah... those Men eh!

I have a feeling it was Grandma pushing him out there with the shotgun Lol

I'm a Man too! Assertive, not aggressive... :)

The world doesn't need any more aggressive guys I think :) Men - Get out of the way of the women I say <Laugh>

navy, incredibly good looking fellow.

Me too.. (ya right)

In the navy? <big grin>

Same here - grandparents from Italy.

Right on.

:)

Take care,
Janis

--- BBBS/LiI v4.01 Flag
* Origin: Prism bbs (1:261/38)

Hi Janis,

The world doesn't need any more aggressive guys I think :)

Worng... :)

Men - Get out of the way of the women I say <Laugh>

You don't know me then, I like women in the way, or any other way.

In the navy? <big grin>

<smile>



Kevin
klement@gypsy-designs.com

... Does a radioactive cat have 18 half-lives?
--- Squish/386 v1.11
* Origin: Gypsy BBS -- Gypsy Designs CDN (403) 242-3221 (1:342/77)