Good Idea Bob:

2nd, 3rd opinons, all around!!!!

They clogged up Alan's ivig machine again. So he'll be there another 3 hours.

No big deal!!!!

I AM HOWEVER, getting the impression (especially from that substitute neurologist yesterday), that some of these SPECIALISTS don't want to give you the time of day!!!!

That is not the case with Dr. Fred, Alan's other doctors, or Dr. Goldfarb. Dr. Goldfarb, while she's a very busy lady, when you are in her office, she is focused on you, the patient, she's not hurrying you through, (like the guy did yesterday).

Why do some doctors hurry you though? Don't they know that patients are fearful, have lots of questions and just want a plain simple factual answer. Not some gobbledygook they throw at you. I don't understand doctors sometimes.

Here's a good example of what I mean? The guy across from Alan is almost 90, in the end stage of alzheimers and cannot go home. They just found a tumor in his bladder. This doctor comes up to his 88 year old wife and says "This is what I want to do, I want to operate on your husband under local anaesthetic, and stop the bleeding". (now guys, You know how they'll do this right??? I don't have to go into details!! ) Well, the look of horror on this poor old lady's face said it all. She goes: "Wait a minute, I don't want to torture my almost 90 year husband, are you crazy". He's not coming home, can't we just make him comfortable???. " The doctor goes "well, you do what you have to do". I know what she wanted the doctor to say. We all do.

So she walks over to me after the docor leaves (I'm sitting with Alan) and she's crying and she goes "what do I do, I don't want to torture him any more, they are doing these things to him, they are puncturing him, he's crying". I said (and call me wrong, crazy, I don't care). I said "hon, you don't have to do anything, is this the end stage of this man's life?" and she said "yes". I said "he sounds like he was a wonderful husband and father and grandfather (all the people around his bedside attested to this fact). She beamed and said "he was the best". I then said (and shoot me if I'm wrong), "then let him go with peace and dignity and in no pain".
She looked like the weight of the world was lifted off her shoulders. I then said "If you have further need of speaking to someone, they have counselors here, speak to a pastoral care person, if you need to come to a conclusion that you can live with". She said "Oh, I can live with this and I know my children can live with this, why doesn't the doctor tell me what to do?" I said "hon, at times like these, it's up to the next of kin (I think that's what I was supposed to say).

Anyway, she made the decision, and they are putting him in hospice.

This has nothing to do with Alan, I know but I saw such pain and indecision.
And the neurologist who saw Alan yesterday, well he couldn't wait to get out of there. He just did his cursory check up of Alan and nodded at me and then left. I knew it was useless to badger him. Badgering gets you no-where. I'll save my questions for Dr. Goldfarb and Dr. Fred.

And don't worry, I'll hog tie him to the chair if Alan comes home and says "I've decided to do the nerve biopsy".

I'll just threaten him with NO MORE MUFFINS OR MY VEGGIE PATTES!!

That'lll do it!!!!

Today I'm making a roasting chicken, sweet potatoes, veggie patties and of course, my muffins.

Anybody want to come for dinner!!!!!

lol
Melody

Well I sure don't understand why this is being suggested NOW. Of all times. I know I've been a few steps behind on following what is going on with Alan, but this one makes no sense to me. I mean, the doctors have already decided that he has an autoimmune or vasculitic neuropathy or they wouldn't be doing IVIG. So I don't see how a sural nerve biopsy (and that's what's generally meant by nerve biopsy) would change his treatment.

When the surgeon says he's "helped" 70 of 100 patients he's biopsied, that, too, makes no sense to me. Is he saying that 70 of them had positive findings and 30 had negative findings? And he counts the 70 as being helped and the 30 as not being helped?

I don't know hwat he means. Does he mean that 70% were positive? And that he helped make the diagnosis by doing the biopsy? Because Alan is already being treated as if there is enough evidence for diagnosis. And for the surgeon to claim there were no untoward side effects in any begs belief. Too many people have lasting pain afterwards. It's painful, and the deficit it leaves is often permanent.

I'd stick with what his primary neuropathy doc suggests and ignore the others. Let them go through the primary, not directly to Alan.

Hi Liza Jane:

I have printed out all the postings and Alan just walked through the door. I'm going to give him a good meal and not discuss anything. Let him get his bearings. We will be making an appointment with Dr. Goldfarb, his neurologist at Methodist for sometime next week. I'm not bringing up anything to do with Sural biopsies.

I knew I was right when I thought it only confirms a diagnsosis. Why are these guys so gung ho to offer up a sural nerve biopsy when he is getting the treatment for autoimmune anyway. Makes one wonder now doesn't it??

Oh, the mail came yesterday and it was a letter from insurance DENYING his request for IVIG. Now isn't this interesting??? Good thing I called them the day he was admitted and MADE SURE HE WAS APPROVED!!!!

I bet I get a bill for $100,000!!!!!

Hah!!!!!!
mel

I am glad to see your right on the ball Mel, i join the others with my thoughts as well, your probably heard the expression " some surgeons are knife happy " i wonder why they say that ? wouldn' be all the $$$$$$$$$$$$$$$$$$$$$$$$$
would it ?

Brian

Id like to be a fly on the wall if that surgeon and Glenn were ever in the same room..............

My goodness, it never even occurred to me that a surgeon would do an unnecessary procedure on anybody.

How stupid am I????

Mel

The guy's [surgeon that is..] gotta get and keep in 'practice' after all! That's why I suggested you read those references and all the back issues available on-line of IGLiving... That was exactly MY instinct reaction when the biopsy issue was proposed to me.....exactly one month before I'd found all you great folks! It was a good thing to know my instinct wasn't stupid?

Melody, please when you say 'postings', I hope you will share them with Alan ONLYand not Dr Fred and Goldfarb? I mean, some docs would conceivably conclude that we are practicing medicine here???? Sharing w/docs, while it mite be a good thing sometimes, well, could get legal issues in play and we wouldn't be able to use this and other resources! Folks, you gave me a super good chuckle w/those comments!

. This mite give you a hint that they don't give out this stuff without a double, triple, and, at times quad check! How often Alan might get it in the future depends on two things: 1-how MUCH relief he gets and 2- what his post-infusion blood work numbers say...He will be getting a lot of blood work in the next few weeks+ doc appts. You literally have to be certified, pedigreed and bonded before you get the stuff!

IF he'd not been approved for IVIG, he would NOT have gotten any or the plug would have been pulled rite away. Surgery is one way to assure the 'cash cow [patient]' is certified, Second opinions from other top neuro docs in NYC is cheaper and less invasive than surgery...That's what I'd done! I am truly grateful I did!

Hugs to you two - j

Don't worry Toots: I don't share these postings with ANYONE other than my Alan.
CIDP (that's what Dr. Goldfarb thinks Alan has). Only way to make absolutely sure would be a sural thing but she said the protein in his spinal fluid makes him eligible for the Ivig.

I did NOT KNOW that Alan would be going for Blood Work after the initial 5 rounds. No one told us this. He just came home today.

When last I spoke to Dr. Goldfarb she told me she would be setting up the home infusion thing. So do we wait for her to call us, do we make an appointment and mention the blood tests!!!!

Honestly, we have no clue. Maybe someone told Alan when he was discharged today but he came right home and started eating my roasted chicken. He says the ivig made him really tired but that's about it.

Oh, I have to ask your advice on something. Alan and I take alprazolam to sleep at night. Not during the day, just at night. We get it online at Costco Pharmacy. Dr. Fred wrote Alan his presciption and he's been getting it there for about a year. He used to take flurazepam but it made him too tired the next day so he takes a 1 mg of alprazolam and he goes to bed for the night. Me too.

Well, Costco phoned me up today saying they can no longer dispense controlled substances in NY until they get a license and it's pending. I told them "but you've been filling our prescriptions for over a year now" and she said "yes, this just happened, we don't know when we'll be back on track, so I'm mailing you back your prescription". Want to know how much they charged for Alprazolam in their online pharmacy? About twelve bucks for 120 pills. These pills last us forever but it was time for a renewal and now this problem comes up.
the insurance does not offer any anti-anxiety meds under their plan. I can't afford ambien. or the other stuff. The alprazolam did the trick.

I'm going to call them tomorrow and see what they offer in a generic sleep aid. What the heck is it with these medicare advantage plans?. Why don't they cover alprazolam. Don't they know that the older we get, we need to sleep and some of us have anxiety problems??

Cmon, it's a cheap pill. I don't understand it.

I hope we are able to find some generic thing so we can get some sleep. Since my son left, I never would be able to have a night' sleep so it just relaxes me enought to sleep. I never abuse it. I won't even take an aspirin if I don't have to.

I mean, I can take it if I have to be up all night. I just hope between the ivig and the cymbalta, that Alan can get to sleep.

Oh well, let's keep our fingers crossed!!!
mel

You WILL have a hefty contribution towards your Catastrophic Deductible with this hospital IVIG session...in other words ONE BIG BILL! Depends on what your cat.ded. is...2-3-4K? That you can arrange to pay to whomever over a schedule.

Where I am, in my Plan, I meet that mid-Jan w/IVIG and other annual tests...after that, My co-pays and pharmacy stuff is n/c...OR the absolute minimum co-pay. You have to watch your EOB's from the ins co lilke a hawk tho..and compare 'em to the bills as the billers try to sneak stuff in...too many folks just pay it as they're too confused...I'm guilty of that for a time or two...It's easier just to pay and get them off your back [for stuff you really don't have to pay for] than the 4 hour hassle between the ins co and the doc's offices....

Insurance co is NOT going to recommend which pills to take for sleep! No way, no HOW! Check w/Dr Fred when you see him...I'll bet he's up enuf on this stuff and both your issues and meds to be on target...HEY I AM NOT A DOC! Far from it for sure!
You'll have Alan home soon and just that should help your sleeping? - j

Melody,

If you plan is under the Medicare umbrella (dictated by what is allowed under Plan D) they dont cover anti-anxiety meds at all in that class (not sure why - its silly) - but they do cover sleeping pills such as ambien, etc......

You can find Alprazalom (generic for xanax) at drugstore.com for almost as cheap as Costco, they ship it to you..... or as Dahlek says - you will reach your deductible asap with IVIG and get ambien or other traditional sleeping medication on your current plan....

Hope you get some sleep