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Current case of CIDP
Posted by: Grumpyguy
Date: January 26, 2023 10:47AM
I have had this neurological disease going on five years now. (CIDP). At its worst, in the past I have been able to at least get around with a walker. It might’ve been a struggle, but I could get up or down.

This last week and a half I have completely crashed. I’m currently in the hospital I can’t move without assistance. I am I’m dictating this with Siri and I insurance has denied the one drug that can fix me up in a heartbeat over and over again. I get this, they approve plasma exchange, which requires me to be in the hospital for 10 days I get my blood completely exchanged every other day. Can you imagine the cost of this versus IVIg. It’s gonna be at least triple the amount.

The bad thing is, I’ve had two treatments of plasma exchange, and I’ve shown no improvement, if even have gotten worse.

I’ve never felt so helpless in my life. Three people can hardly pick me up. I can’t do my legs by myself I can’t sit in the chair I can barely feed myself because my hands are so numb. To use the iPhone I have to use dictation because I don’t have enough strength to even hardly push the screen.

So if you could maybe say a few prayers and well wishes it would be greatly appreciated.



Bryan
______________________________________________________
Mac Studio 2022
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Location: Cincinnati
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Re: Current case of CIDP
Posted by: Frank
Date: January 26, 2023 10:57AM
Bryan, wishing you a better tomorrow and a more compassionate insurance company.
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Re: Current case of CIDP
Posted by: cbelt3
Date: January 26, 2023 11:30AM
Love and best wishes for a good outcome winging your way through the aether.

But you DO get to say “Renfield ! Bring me fresh blood !” In your best Bela Lugosi accent. So there’s that…
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Re: Current case of CIDP
Posted by: Buzz
Date: January 26, 2023 12:40PM
Damn kiddo, that sucks rocks. Can ya get over to the Cleveland Clinic? They've got some serious good neuro doods over/up there. As ya know, I too have been fighting what turned out to be a cluster of autoimmune neuro crud, that took a bunch of top docs from all over the country ~25 years to properly (finally) troubleshoot about 13 years ago..... the first couple of decades were spent confusing mostly underequipped neuro docs w/ a patient they couldn't figure out.

Neuro crud seems to be as much art, as it is science, if not more so, and the tough stuff really isn't seen/known by many/most neurologists. CIDP is more of catchall diagnosis that includes tons of patients that the neuro docs can't fit into other, more specific neuro disease classifications. CIDP is also the patient's and insurance company's best friend, as because so many peeps get lumped in there, it's the path of least resistance to get approval for treatment. At least initially. As long as you respond, the system is there for you; but as soon as the results don't meet benchmarks, insurance/treatment hell begins when you're abandoned.

Again, sorry to hear of this turn for worse, but it sure sounds like you need to hook up w/ a neuro artisan ASAP. Find one/a group that has actual expertise in dealing w/ rare neuro crud; otherwise you're just hanging out w/ a bunch of theoretical neurologists that are throwing darts at the theoretical dartboard that is your actual life...., while they hope and pray to hit a bullseye that'll do you some good. If/when they do get something right, hopefully they learn something, but that helps their next patient more than it helped you.

No clue how you're hooked up for a patient advocate in Bengalville, but the big teaching hospital conglomerates are usually best at providing such services, and finding coverage for complex cases. You've got a couple of the best neuro resources within a reasonable distance from you. Maybe ask your peeps to try to get you hooked up w/ the Cleveland Clinic folks, or for a few hundred miles further, you could try the Mayo Clinic's offerings in Rochester, MN.

Best of luck, and we'll throw in the prayers and well wishes, too.
==
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Re: Current case of CIDP
Posted by: Todd's keyboard
Date: January 26, 2023 12:55PM
Best wishes from Todd's keyboard
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Re: Current case of CIDP
Posted by: rgG
Date: January 26, 2023 01:13PM
Sending all the good thoughts I can to you.
Please let the insurance people get with the better plan.





Roswell, GA (Atlanta suburb)
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Re: Current case of CIDP
Posted by: N-OS X-tasy!
Date: January 26, 2023 01:38PM
Sending good thoughts your way. smiling smiley



It is what it is.
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Re: Current case of CIDP
Posted by: Speedy
Date: January 26, 2023 01:56PM
Best wishes for a speedy recovery. That insurance stuff is crap. My daughter used to get IVIG on a regular basis but she was on Medicare and Medicaid in Minnesota so no issues.



Saint Cloud, Minnesota, where the weather is wonderful even when it isn't.
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Re: Current case of CIDP
Posted by: mrbigstuff
Date: January 26, 2023 01:59PM
I will focus some good vibes your way. All the luck to you.



Hurts like a bastid...
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Re: Current case of CIDP
Posted by: lost in space
Date: January 26, 2023 02:20PM
Wishing for the best possible outcome for you.



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Re: Current case of CIDP
Posted by: RecipeForDisaster
Date: January 26, 2023 02:42PM
So sorry to hear this. I have had some insurance struggles with IVIG, but not like yours. Can you contact the manufacturer? Sometimes they can lend a hand, either paying for a good portion of it, or helping with prior authorization. Good luck and I’ll be thinking of you! Being in the hospital sucks so badly, and I don’t want plasma exchange, either.
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Re: Current case of CIDP
Posted by: Tiangou
Date: January 26, 2023 02:47PM
Quote
RecipeForDisaster
So sorry to hear this. I have had some insurance struggles with IVIG, but not like yours. Can you contact the manufacturer? Sometimes they can lend a hand, either paying for a good portion of it, or helping with prior authorization. Good luck and I’ll be thinking of you! Being in the hospital sucks so badly, and I don’t want plasma exchange, either.

On a similar note: After my insurance company denied me expensive meds, I asked my physician to intervene and she got on the phone with them and yelled until they caved. Any chance you can get a doctor at the hospital to advocate for you?

...Been locked in hospital-jail for weeks, myself. You have my sympathy and prayers for a speedy recovery!



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Re: Current case of CIDP
Posted by: anonymouse1
Date: January 26, 2023 03:18PM
Wishing abundant healing for you.
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Re: Current case of CIDP
Posted by: Buzz
Date: January 26, 2023 03:40PM
Quote
RecipeForDisaster
So sorry to hear this. I have had some insurance struggles with IVIG, but not like yours. Can you contact the manufacturer? Sometimes they can lend a hand, either paying for a good portion of it, or helping with prior authorization. Good luck and I’ll be thinking of you! Being in the hospital sucks so badly, and I don’t want plasma exchange, either.

Grifols (Grumpy's IVIG manufacturer) will kick in up to $10K/year "copay assistance"...., but that barely barely puts a dent in things when insurance vaporizes.

As Doc and I have noted, patient advocacy is much needed.....
and a neuro artisan.
==
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Re: Current case of CIDP
Posted by: AllGold
Date: January 26, 2023 03:42PM
Best wishes!

And I hope what Buzz and some others have said helps.
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Re: Current case of CIDP
Posted by: DP
Date: January 26, 2023 05:06PM
...Been locked in hospital-jail for weeks, myself. You have my sympathy and prayers for a speedy recovery!

Right now?

G-sending prayers, vibes, wishes, thoughts; anything to improve your situation. And, Matt got my grandfather's 1912 Rockford pocket watch today. Thx for the tip!

And see if there any advocates around. The squeaky wheel...





In memory of Dickie Betts.

Disclaimer: This post is checked for correct spelling, punctuation, and grammar. Any attempts at humor are solely the responsibility of the author and bear no claim that any and all readers will approve or appreciate said attempt at humor.
My name is DP, and I approve this message.

"Show me the man and I’ll show you the crime."- Lavrentiy Beria
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Re: Current case of CIDP
Posted by: RecipeForDisaster
Date: January 26, 2023 06:25PM
Quote
Buzz
Quote
RecipeForDisaster
So sorry to hear this. I have had some insurance struggles with IVIG, but not like yours. Can you contact the manufacturer? Sometimes they can lend a hand, either paying for a good portion of it, or helping with prior authorization. Good luck and I’ll be thinking of you! Being in the hospital sucks so badly, and I don’t want plasma exchange, either.

Grifols (Grumpy's IVIG manufacturer) will kick in up to $10K/year "copay assistance"...., but that barely barely puts a dent in things when insurance vaporizes.

As Doc and I have noted, patient advocacy is much needed.....
and a neuro artisan.
==

I tried a bunch of agencies like this one: [www.panfoundation.org] - I don’t have the right diagnosis, but I thought CIDP was one of the ones they’d help with. My new IVIG manufacturer only covers $3K a year - but Grifols again doesn’t cover my diagnosis. PAN may be of assistance, or be able to connect you with more help if they can’t. Sometimes a peer-to-peer can be of help, too.
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Re: Current case of CIDP
Posted by: wave rider
Date: January 26, 2023 07:36PM
Best of wishes Bryan.

Have an advocate contact your local, state, and national politicians; sometimes a call from one of their offices can get things moving.



=wr=
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Re: Current case of CIDP
Posted by: mrbigstuff
Date: January 26, 2023 08:25PM
I have no idea about any of this, but some of you folks who seem knowledgeable in this field have great ideas that, perhaps, GG can actually use. Bryan, is that possible?



Hurts like a bastid...
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Re: Current case of CIDP
Posted by: S. Pupp
Date: January 26, 2023 09:29PM
Dammit! I’m so sorry to hear that!
I hope and pray things turn around.

Edit:
That goes for you also, Tiangou.



Edited 1 time(s). Last edit at 01/26/2023 09:31PM by S. Pupp.
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Re: Current case of CIDP
Posted by: Harbourmaster
Date: January 26, 2023 10:02PM
Prayers all around. Also sending a big dose of PEACE your way as I find it to be remarkably helpful in situations like this.



Aloha, Ken


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Re: Current case of CIDP
Posted by: Buzz
Date: January 26, 2023 10:07PM
"I tried a bunch of agencies like this one: [www.panfoundation.org] - I don’t have the right diagnosis, but I thought CIDP was one of the ones they’d help with. My new IVIG manufacturer only covers $3K a year - but Grifols again doesn’t cover my diagnosis. PAN may be of assistance, or be able to connect you with more help if they can’t. Sometimes a peer-to-peer can be of help, too."

Before Mrs. Buzz was unceremoniously put out to pasture by her airline (after 43+ years) because of the pandemic (they made her an offer we didn't refuse), we had really good insurance thru UHC. When that got kicked to the curb as she went grazing, we opted for the best Blue Shield PPO plan (F+) available, as a Medicare Supplement. F+ is no longer available, they're into G's now for their deluxe coverage, which unfortunately isn't as good as the old F+ is/was. Pricey, yeah, but it minimizes the issues and hassles.... not totally mitigates 'em by any stretch, merely lessens the inevitable battles.

There's been "issues" w/ meds and coverage all along, I was just trying to pass on relevant tidbits to Grumpy based on what I've learned. FWIW, Grifols only paid $2,500/year until peer pressure during the pandemic encouraged them to raise it to $10K. I'm approaching my 13th year of infusions in a few weeks, and the bills over that time have averaged about $500K/year, so $10K is still like spitting in the ocean. I gave Grumpy the then Grifols copay assistance info, circa 2017.

Grumpy's situation takes me back to 2009-10 when I was in a heap-o-hurt, so I know his pain, which is now ready for its Bar Mitzvah. Getting the full, correct diagnosis, and a treatment plan that works, is one heckuva a relief; that's why I was pushing for maximum patient advocacy. For Grumpy, the Cleveland and Mayo Clinics are as good as it gets, and they both have incredible advocacy departments. If possible, I'd be getting peeps working on garnering advocacy thru both of those venues, and not giving up until one, or both of 'em were secured.

Again, CIDP is basically the catchall for "neuro crud waiting for a more complete diagnosis, because so much is still unknown about neuro crud, but we gotta call it something that sounds impressive so we don't look stupid....". CIDP is code for "the system".
==
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Re: Current case of CIDP
Posted by: rich in distress
Date: January 26, 2023 11:25PM
Best wishes for healing and peace.
I’m praying for you all.
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Re: Current case of CIDP
Posted by: Tiangou
Date: January 27, 2023 05:41AM
Quote
DP
...Been locked in hospital-jail for weeks, myself. You have my sympathy and prayers for a speedy recovery!

Right now?

To clarify:

NOT right now!

But repeatedly. Last time was last summer.



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Re: Current case of CIDP
Posted by: RecipeForDisaster
Date: January 27, 2023 07:15AM
Quote
Buzz
"I tried a bunch of agencies like this one: [www.panfoundation.org] - I don’t have the right diagnosis, but I thought CIDP was one of the ones they’d help with. My new IVIG manufacturer only covers $3K a year - but Grifols again doesn’t cover my diagnosis. PAN may be of assistance, or be able to connect you with more help if they can’t. Sometimes a peer-to-peer can be of help, too."

Before Mrs. Buzz was unceremoniously put out to pasture by her airline (after 43+ years) because of the pandemic (they made her an offer we didn't refuse), we had really good insurance thru UHC. When that got kicked to the curb as she went grazing, we opted for the best Blue Shield PPO plan (F+) available, as a Medicare Supplement. F+ is no longer available, they're into G's now for their deluxe coverage, which unfortunately isn't as good as the old F+ is/was. Pricey, yeah, but it minimizes the issues and hassles.... not totally mitigates 'em by any stretch, merely lessens the inevitable battles.

There's been "issues" w/ meds and coverage all along, I was just trying to pass on relevant tidbits to Grumpy based on what I've learned. FWIW, Grifols only paid $2,500/year until peer pressure during the pandemic encouraged them to raise it to $10K. I'm approaching my 13th year of infusions in a few weeks, and the bills over that time have averaged about $500K/year, so $10K is still like spitting in the ocean. I gave Grumpy the then Grifols copay assistance info, circa 2017.

Grumpy's situation takes me back to 2009-10 when I was in a heap-o-hurt, so I know his pain, which is now ready for its Bar Mitzvah. Getting the full, correct diagnosis, and a treatment plan that works, is one heckuva a relief; that's why I was pushing for maximum patient advocacy. For Grumpy, the Cleveland and Mayo Clinics are as good as it gets, and they both have incredible advocacy departments. If possible, I'd be getting peeps working on garnering advocacy thru both of those venues, and not giving up until one, or both of 'em were secured.

Again, CIDP is basically the catchall for "neuro crud waiting for a more complete diagnosis, because so much is still unknown about neuro crud, but we gotta call it something that sounds impressive so we don't look stupid....". CIDP is code for "the system".
==

All this stuff, for me, has been …"well, let’s try this, it might help, and hopefully doesn’t hurt". I do have a nurse case manager through my insurance - I forgot about her because the current one is not useful. The one I had before was excellent - maybe see if that’s an option? Our out of pocket max is $6500 per person, so the copay assistance helps us to get there (they count the full copay even if I get help with it). It’s still a lot of money, and we have good insurance! I’m still waiting on a real diagnosis myself - everyone just hopes IVIG helps whatever is wrong. I wish you both the best - don’t stop fighting, either for healing or for help paying for all of this.
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Re: Current case of CIDP
Posted by: mspace
Date: January 27, 2023 08:50AM
Not festive.

Please hang in there, and I hope you have a personal advocate besides any "official" ones.
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Re: Current case of CIDP
Posted by: A-Polly
Date: January 27, 2023 10:17AM
What a nightmare. You have all possible positive waves coming at you, Bryan. And I hope so much that you will get more effective medical treatment soon, and that someone in your family or medical group will show up to advocate for you. smiley-signs003
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Re: Current case of CIDP
Posted by: Buzz
Date: January 27, 2023 12:22PM
RFD= "All this stuff, for me, has been …"well, let’s try this, it might help, and hopefully doesn’t hurt". I do have a nurse case manager through my insurance - I forgot about her because the current one is not useful. The one I had before was excellent - maybe see if that’s an option? Our out of pocket max is $6500 per person, so the copay assistance helps us to get there (they count the full copay even if I get help with it). It’s still a lot of money, and we have good insurance! I’m still waiting on a real diagnosis myself - everyone just hopes IVIG helps whatever is wrong. I wish you both the best - don’t stop fighting, either for healing or for help paying for all of this."

That's about what our UHC insurance max OOP was, and the nurse case managers thru UHC were also excellent.... for what they were able to help with. For the complicated, neuro-related stuff, an advocate from the medical institution is invaluable. Grumpy needs institutional advocacy ASAP!

As noted before, CIDP is a catchall diagnosis, and IVIG is the "pot of wet spaghetti thrown against the wall" treatment to see what sticks. Kinda pricey, and definitely an art form to titrate correctly. Still, gotta demonstrate measurable/quantifiable results, within insurance guidelines, otherwise they cut you off. Advocacy, and/or being part of a medical trial, or research project can keep ya going at a major institution/teaching facility like the Cleveland and Mayo Clinics; which is where Grumpy oughta get his now uncooperative body, pronto.

The Art Of Neurology means ruling stuff out, as much as finding out what's really in ya, as well as trying to address your symptoms along the way. Not a game best played outside of a major institution/teaching facility if you've got something/anything that doesn't nicely fit into a well known pigeon hole (that is fully covered thru existing insurance). With so much neuro crud still being unknown, once ya know you're in the realm of the unknown, ya gotta get to a major institution/teaching facility to give yourself the best chance of finding out what's ailing ya, and hopefully getting it treated to whatever degree is possible.

Maybe Grumpy can move in w/ belty for awhile, and work something out w/ the Cleveland Clinicians. Something about a famous couch there rings a bell.
==
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Re: Current case of CIDP
Posted by: Paul F.
Date: January 29, 2023 01:56AM
Damn, dude... I didn't see this until now (bad week of my own).

My very best wishes headed your way! I hope you get some sizeable recovery!



Paul F.
-----
A sword never kills anybody; it is a tool in the killer's hand. - Lucius Annaeus Seneca c. 5 BC - 65 AD
----
Good is the enemy of Excellent. Talent is not necessary for Excellence.
Persistence is necessary for Excellence. And Persistence is a Decision.

--

--

--
Eureka, CA
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