NeuroTalk Support Groups

NeuroTalk Support Groups (https://www.neurotalk.org/)
-   Multiple Sclerosis (https://www.neurotalk.org/multiple-sclerosis/)
-   -   Tysabri Information & Check In (https://www.neurotalk.org/multiple-sclerosis/37891-tysabri-information-check.html)

Victor H 11-28-2008 10:01 PM

Quote:

Originally Posted by SallyC (Post 416398)
Sheesh is right, Vic. If you're not in the poorhouse yet, Insurance premiums and out of pocket expenses will put you there.:mad:


The poorhouse is in our "Uptown" neighborhood. We live under a rock now.

I guess this is the way Anthem Blue Cross says "Seasons Greetings, ..., now bend over".

Yeesh.

ewizabeth 11-29-2008 12:23 AM

Hi Everybody,

I had infusion #20 Wednesday and it went well. I have really really good veins. My nurse worships before them each month. :D She said if everyone had veins like me her job would be a lot easier. In particular my right arm, she loves that vein. I said, oh yes, everybody should have one of those, lol.

Anyway, I had no new lesions on my MRI. :) Also, my fatigue was not as bad this time, probably because of the Provigil?

My eye doctor had mailed my eye test results and the neuro was training the nurse with the images. He said I had some evidence of damage from the MS in the past. I'd always thought my eyes were ok, I don't remember anything happening though I have had some pains in the eyes sometimes... :o

Oh well, until next time, Dec. 17th...

4boysmom 11-29-2008 10:12 AM

Vic,
I'm sorry about your insurance. I find insurance all so frustrating. I have two different insurances, and the second one actually covers better than my primary.

But instead of say, taking my Ty bill, and Blue Cross pays all but $500, instead of Aetna, just paying 90% of the $500 that didn't get paid, it looks at the whole bill, subtracts what's already been paid by Blue Cross, and then pays a few dollars. I'd have no problem with that if our premiums were less because we have other insurance.

They'll say they are liable for an amount, like $1500, but then because they other insurance paid $1400, they'll only pay $100, and I'm left with a huge bill. It doesn't seem right, but I can't get anyone to listen to me. They say it was the way the policy was bargained.

I guess I'll just be happy I have the insurance. My MS bills and regular check-ups this year will be close to $30,000. I've probably had to pay $2,000 of that. I just put money in a flex account, and be glad I can afford the medicine.

Our 19 yr. old son had a rough medical year though. He is a very healthy kid overall, playing varsity sports to the max his senior year. He's had tachycardia since birth though that we finally fixed, and had to have an emergency appendectomy! His total medical bills this year was over $53,000! And he is only covered under one insurance. So I'm looking forward to 2009 and getting medical bills back under control!

ewizabeth 11-29-2008 01:38 PM

Vic,

Is your plan an individual policy or a group plan? At work we have a group plan and it only has two people on it. They get a break in costs and get the benefits of a work plan compared to an individual plan. In Illinois, you only have to have two people on the plan to have group insurance.

Theirs goes up each year because of age and minor claims, but our agent offers us new plans with other companies at a much lower cost each year. If they wanted to they could switch to the other insurance company plans and save lots of money until they were adjusted at the end of that first year due to claims, etc... Could you possibly do a group plan and add your wife as an employee? Just a thought...

DH and I are on his group plan through his union and we still pay about $15,000 a year for monthly coverage and out of pocket because of the MS. If I was on the plan at work, the company (and each employee) would probably be paying twice as much as we are now if we stayed on the same plan year after year...

This is one of the main reasons I expect to keep working as long as I can... who could afford this and retire? Certainly not me!

Grammie 2 3 11-30-2008 04:51 PM

Quote:

Originally Posted by ewizabeth (Post 416559)
Hi Everybody,

I had infusion #20 Wednesday and it went well. I have really really good veins. My nurse worships before them each month. :D She said if everyone had veins like me her job would be a lot easier. In particular my right arm, she loves that vein. I said, oh yes, everybody should have one of those, lol.

Anyway, I had no new lesions on my MRI. :) Also, my fatigue was not as bad this time, probably because of the Provigil?

My eye doctor had mailed my eye test results and the neuro was training the nurse with the images. He said I had some evidence of damage from the MS in the past. I'd always thought my eyes were ok, I don't remember anything happening though I have had some pains in the eyes sometimes... :o

Oh well, until next time, Dec. 17th...

Glad you're doing well and a bit jealous of "that" vein-but doing ok with my difficult ones;) Sorry for the eye damage but since you're not aware of it can't be too bad.
I will have #28 Fri:D and a couple of weeks ago my bladder started improving-YEA!!!!
alias lindaincolorado

ewizabeth 11-30-2008 06:16 PM

Quote:

Originally Posted by Grammie 2 2 (Post 417485)
Glad you're doing well and a bit jealous of "that" vein-but doing ok with my difficult ones;)

I think I should take out insurance on the special vein, lol. I know I'm very lucky to have good veins, and I hope they stay that way! :)

Natalie8 12-01-2008 10:00 PM

I had my 6th Tysabri infusion this afternoon. I came home and collapsed on the couch and fell asleep for 2 hours. When I woke up I had a low grade fever, nausea, headache, some dizziness...just general cruddy flu-like stuff. But hopefully it will be like the 2nd time around (same feeling after the 2nd infusion) and I will be feeling back to normal in 2 days. I certainly hope so. Today was hard. There were a number of people in the MS clinic who were pretty bad off, including the 3 other people getting Tysabri with me today as well as some in the waiting room. Not only do I feel for them but I also worry about my own future sometimes. Maybe I'm just extra prone to stress because I'm feeling pretty darn crappy right now. :( I snapped at the DH because I wanted to control the remote and snapped when he tried to move my laundry out of the laundry room. Hmmm....pretty clear I'm not feeling in control right now with this MS monster. Trying to keep positive!

ewizabeth 12-01-2008 10:20 PM

I hope you'll feel better in a couple of days Natalie! :hug: I had a lot of days in the beginning where I'd feel total exhaustion for a few days following the infusion. I hope that's all it is and you'll be ok soon.

4boysmom 12-03-2008 08:18 AM

Natalie,
I also find it hard to see others with MS and their struggles. I have a neighbor with MS, and she is pretty much in the same shape I am, not a lot of symptoms, just the overall fatigue much of the time.

We both work full-time and do all of our other motherly/church/ neighborly stuff. So when I see someone struggle to walk or show up in a wheelchair, it gets me thinking.

I start thinking of how I should remodel my house to accomodate wheelchairs and things like that. Maybe if I plan for it, it will never happen!

But life is good, and I'm glad I have insurance that will help me afford Ty, and I just do the best I can!

Natalie8 12-03-2008 03:31 PM

Quote:

Originally Posted by 4boysmom (Post 418790)
Natalie,
I also find it hard to see others with MS and their struggles. I have a neighbor with MS, and she is pretty much in the same shape I am, not a lot of symptoms, just the overall fatigue much of the time.

We both work full-time and do all of our other motherly/church/ neighborly stuff. So when I see someone struggle to walk or show up in a wheelchair, it gets me thinking.

I start thinking of how I should remodel my house to accomodate wheelchairs and things like that. Maybe if I plan for it, it will never happen!

But life is good, and I'm glad I have insurance that will help me afford Ty, and I just do the best I can!

I'm like you 4boysmom. Not a lot of symptoms either. But I have 9 lesions and some black holes. So yes, I worry about the future sometimes. I did read a story about a woman who was diagnosed with MS after she had bought her dream home. It had 2 floors -- she sold it and bought a one story home because she thought she might be in a wheelchair and unable to use stairs. Well many many years later she was still walking and regretting she had sold the dream house. I think it is good to plan for the future but also probably good not to overplan so much that you don't live your life to the fullest.

General questions for everyone:
1. How often does your neuro do an MRI while you are on Tysabri? It's standard to have one at the 6th month mark, right? (I just had my 6th infusion). What about after that one?
2. At what point did you all get tested for the antibodies? I think I got panicky after Monday's infusion that I was having some kind of reaction that typically suggests antibodies (nausea, fever, dizziness--at least according to the Tysabri insert). Has anyone developed antibodies further down the line? I think I had the test at the 3 month mark -- never heard anything so I assume everything is ok.


All times are GMT -5. The time now is 05:06 PM.

Powered by vBulletin • Copyright ©2000 - 2025, Jelsoft Enterprises Ltd.

vBulletin Optimisation provided by vB Optimise (Lite) - vBulletin Mods & Addons Copyright © 2025 DragonByte Technologies Ltd.