They want Alan to get a nerve biopsy?????
 

Okay, let me catch my breath. I am going around in circles because I've been reading these boards for years and I have read MANY THINGS ABOUT NERVE BIOPSIES!!!

Here's what happened. Alan just phoned me. It seems Dr. Zonenshein, the neurosurgeon just visited Alan in his hospital room. Alan said he was just like Dr. Fred (so he's a good guy). He had Alan's MRI films and he told Alan the following: "Alan, your stenosis is, on a scale of 1 to 10, a 5. I don't think it's causing your neuropathy. I think the ivig might help you.

Get that???? He doesn't think Alan's back is causing his neuropathy!!!!
He doesn't think his spinal stenosis has anything to do with his PN. Alan explained how when I massage his back and his spine and the pain goes away, the doctor replied, 'well, she's massaging muscles and that brings oxygen and circulation into your feet".

The doctor said he thought the ivig might help Alan, BUT......... if it doesn't, "I would recommend you let me do a nerve biopsy. I've done many of them and let's say I did 100, well, I helped 70 people. You might be one of the 70 or you might be one of the 30. You never know."

I went nuts on the phone and I said to Alan: "Are you talking about a sural nerve biopsy???, I've heard serious stuff about this, it's dangerous and the only thing it does is tell you a definite diagnosis, it DOESN'T FIX ANYTHING!!!!

Now I am certain that I have read this on the boards. The only thing getting a sural nerve biopsy is to get a definite diagnosis. Now am I right or am I wrong?

Also, Alan said: "Well, he didn't mention the word Sural He just said nerve biopsy". I said to Alan: "Listen, did he say punch biopsy or sural nerve biopsy"? and Alan said "all he said was nerve biopsy".

And when Alan asked him "Isn't this a risky procedure, won't I be laid up"? the doctor responded "Oh, no, you go in and come out the same day, you'll just be a little numb and your feet are numb anyway aren't they?" He told Alan, he takes a little piece of the nerve from the bottom of the ankle, he sends it for a biopsy and when they get the results, they find out if they can fix it or they can't fix it!!!

So what the heck is going on here? I told Alan, "Listen, you are just beginning this ivig thing, it takes time, you DON'T GO GETTING ANY NERVE BIOPSY, at least don't even consider it now".

Alan said: "Calm down, we are not talking right now, we are talking IF the ivig doesn't work". Way down the road.....I asked him what else did the doctor say and the Alan said: He said: "Alan, if you were not able to walk more than a block, I would say you have serious back problem, but you walk, you go to the gym, YOU DO NOT HAVE A BACK PROBLEM, so I don't recommend any surgery on your back and even if I did operate you can't get an endoscopic dischectomy, I would have to put a rod in your back (with his stenosis). The doctor further said: "So thankfully, we don't have to go that route" This is exactly what the doctor told Alan.

Alan said he was very very nice, answered all his questions (I do wish Alan thought to ask him if he was talking about a sural nerve biopsy). Alan said he has never heard of a sural anything. That's because I'm the one who listens when the doctors are talking.

The other day when Dr. Goldfarb came to visit Alan, I distinctly asked her "Have you ever actually diagnosed anyone with CIDP?" and she responded "Only with a nerve biopsy" and I replied: "You mean a sural nerve biopsy?" and she said "my, you are a smart woman".

So I do know nerve biopsies are serious stuff right?

I need more information on this stuff. Thankfully he's not jumping into this head first. Got to give this ivig thing a chance, right?

jeez!!!!!!!!

okay, just went to the following website, where it explains it:
http://www.healthline.com/adamcontent/nerve-biopsy

Describes the whole thing, and like I said, doesn't say where it fixes anything, it just confirms a diagnosis. Maybe I'm wrong!!

Do a search here...there has been a lot of discussion of sural nerve biopsies and not too much of it is good. When they suggested in the beginning that i go for a sural nerve biopsy, i read about it and went to a new neurologist. I would have a lot of questions for that doctor as to why . Im sure you will. Good luck.

Don't you worry about me asking questions. From what I understood from Dr. Goldfarb's face when I discussed nerve biopsy, I don't thing she would suggest this as an "easy fix", or something to that effect.

She's much to thorough. Anyway, we're a long way from there.

From what I've read, we have to give the ivig a few months to see any improvement, and Alan knows this, thank god for that.

I often wonder why, man years ago, they didn't suggest a nerve biopsy when Alan first got the neuropathy and it progressively got worse.

His first neurologist Dr. Clark, all those years ago in Coney Island Hospital did say "the only way to find out more about your neuropathy is a sural nerve biopsy" but then he stopped talking about it.

Very confusing!!!

Melody

Mel--
 

--usually, a sural nerve biopsy is suggested in "idipathic" neuropathy cases if a neurologist feels there is the possibility the neuropathy is caused by some sort of autoimmune and/or vasculitic disease. They take a little piece of the sural nerve and then examine it under powerful microscopes to see the condition of the myelin and the axonal fibers--there are some telltale signs in certain conditions, such as amyloid (which I severely DOUBT Alan has), or in certain vasculitic autoimmune conditions such as polyarteritis nodosa, Churg-Strauss, and others, that can be detected this way.

Unfotunately, in at least half the cases, even the nerve biopsy doesn't definitively establish a diagnosis. Even a CIDP suspicion may not be confirmed in such a procedure, as the damage caused may be patchy and incomplete. (What they look for when CIDP is suspected is the pattern of nerve damage/repair/pattern/repair that CIDP tends to cause in its relapsing/remitting progression.)

The bigger problem with sural nerve biopsies is the skill of the surgeon doing it. It is not MAJOR surgery in the sense of a bypass, but it still creates a wound that may be vulnerable to infection and the like. And a lot of people that have had it report a permanent numb area of varying sizes near the ankle afterwards.

As you've mentioned, such a biopsy is something that's still down the road; let's see how the IVIg works first.

Take a look at this:

http://www.neuro.wustl.edu/neuromuscular/nother/bx.html

--and click around a little to read about the types of findings associated with different conditions.

READ, I mean REALLY READ
 

This site: http://jnnp.bmj.com/cgi/content/full/64/1/84

I would be paying special attention to:

THE CONCLUSION IN THE ABSTRACT and, under METHODS the 'clinical features of patients w/CIDP. [IVIG IS used 'off-label for CIDP, but it is accepted practice]. Look at the #'s and percentages[confirming diagnosis in 40-60% patients]. This is an older article [10years] but an important article in that it states that other clinical features, such as response to IVIG are as effective as a seural biopsy.

Most insurance companies today do not require biopsies for IVIG 'off-label' use in treating CIDP. Criteria rely more on chomprehensive blood and spinal fluid analysis and nerve conduction tests. I believe I'd PM'ed you some info on your insurances plan and it's standards for IVIG...re-read it. Very carefully. I believe, I recall that they don't recommend seural biopsies as a rule, providing other diagnostic conditions were indicative of CIDP/autoimmune.

Further, how the sample is treated, prepared and assessed is a key to accurate diagnosis and the need for a biopsy!

There are two sides to biopsies, seural [I've read mostly negative comments on the procedure - ask kmeb] and punch biopsies [positive re s/e's but only confirms SMALL FIBER PNs - ask Bob B]. Biopsies do NOTHING regarding treatments, or treatment options, they only reinforce diagnosis. From my viewpoint, a seural biopsy was 'presented' to me as a diagnostic necessity, I DECLINED, but I'd met, essentially 9 of the 10 requirements for positive CIDP/acute progressive PN diagnosis.

ALAN will need to be VERY CLEAR reading on his own what the pros and cons are regarding such a REALLY INVASIVE procedure, should the biopsy be a seural one. Especially if other test results indicate actual or borderline CIDP.

Think long and hard about this, please! - j

Dahlek:

You said: "ALAN will need to be VERY CLEAR reading on his own what the pros and cons are regarding such a REALLY INVASIVE procedure, should the biopsy be a seural one. Especially if other test results indicate actual or borderline CIDP.

Think long and hard about this, please! "


Believe me, I'M NOT THE ONE WHO HAS TO DO THE THINKING!!! Alan already knows how I feel about these biopsies. I heard such terrible things.

But the thing that confuses me is the need or a biopsy versus the going on IVIG. Isn't it simpler (before they put you on IVIG, to say, Let's give you a nerve biopsy, it's an in and out thing, then we'll biopsy it, let you know AND THEN YOU WILL PROBABLY KNOW EXACTLY WHAT YOU HAVE"

Maybe I'm mistaken, but tht sure beats a 5 day stay in a hospital away from your wife, doesn't it??

The way the doctor put it, it's no big deal, (Dr.Goldfarb says this guy is the best in town) and Alan says he was just like Dr. fred). So if Alan (who used to be a private detective), is comfortable with someone, believe me, I'll be comfortable with this man.

But the doctor definitely told Alan, "if you are in the 70 our of the 100 that I can help, we can fix this." This is what confuses me. How can they fix it when (to my knowledge, the only treatment is what Alan is undergoing now).

It's not like "oh, we'll definitely know you have CIDP and there's SOMETHING ELSE WE CAN DO FOR YOU". Is there another treatment besides IVIG?
This is what Alan told me last night and believe me, HE BELIEVES THE FOLLOWING: "Maybe they will see something in the nerve, they'll know what nerve it is, and maybe they can block it and stop the pain". I countered with "Alan, you have PN in both feet (between the toes)." Alan said "So they'll biopsy both feet".


Oh My Lord. That's all I can say.
I'm getting more facts, that I can tell you. And we'll be discussing the whole thing with Dr. Goldfarb (and our lovely Dr. Fred).

this 18 year journey with the PN will either be resolved, relieved or I'll shoot myself.

mel

perhaps the
 

new autoimmune drug treatment, posted by Billye?

That is all I can think of as "treatment" in addition to IVIG.

I would think the best time to do a biopsy would be BEFORE treatment.:confused:
IVIG now could cloud the diagnosis.

You know you have the right to refuse, always.
After a biopsy, there may be PAIN in addition to numbness.:rolleyes:

THANK YOU MRS. D!!!!!

Let's hope Alan takes his sweet time before going gung ho with this.
I'll look into what you were indicting about Billy's new autoimmune treatment

My phone rang at 6:56 this morning. I was in a dead sleep. It was Alan with a cheery GOOD MORNING!!! I was in a dead sleep. I said "are you out of your mind, it isn't even 7 a.m. yet. He counters with "but it's 8 a.m.).

NOT IF I DIDN'T CHANGE MY CLOCKS IT'S NOT!!! and even if I did, it's still not 7 a.m.

He said "I knew you'd start yelling at me eventually"

lol
mel

Mel.
I've not had a 'Sural'. (I have had the Skin Punch Biopsy)
I've read about it on these BB's for 8 years.
IMHO, the results (not the Dx, but the after affects) can be worse than the PN and that can not be fixed - ever !
More pain, More suffering!

The consensus is that the test results, more than 50% of the time,
only confirm the previous diagnoses.

I'd get detailed info on that Dr's claim that 70 out of 100 get 'fixed'.
How? Why? Which, when, where, who, .......DUH !!
(For some reason, some surgeons just love to do Sural's.
I think they need the practical experience....or maybe it's a good way to pay the Country Club's annual fees....who knows?
They just gotta do 'em..damn the damage done to the patient)

I would not take the risk unless I'd had a 2nd, & 3rd opinion on it,
from a PN neurologist - specialist. Not just a neurosurgeon.

Biopsy
 

Melody -

No - its not necessary to get sural nerve biopsy unless spcific conditions are suspected - they did mine because I had a super rapid progression of the PN and suspected vascilturs or amyloid- the procedure itself - depending on the doc - shouldnt hurt - but its important to have doc who has experience if you do get it done... they took mine out of the back of my calf - and the severe numbness all down the right side of my leg and foot is severe as a result - you could stick a fork in it and I'd never know - thats not going away (its been 5 years) - also, the incision heals in about a week - a few stiches - no big deal - but I and I know lots of others have had residual shooting pains around the incision that also dont seem to go away.

It did show the doctors at the time that my PN was severe, and exactly the type of nerve damage done - ruled out vasilitus and that amyloid biopsy came up clear - but they are still looking in other organs for it...

My current doc ordered by IVIG based on a combo of the damage he saw on the biopsy and the NCS/EMG's...... I dont think the sural nerve biopsy was the clincher.....

If your insurance is already paying for the IVIG - unless the docs suspect something else really serious - I'd really think about it.... Alan seems to do so well already - why rock the boat?

Agree with others - get lots of opinions as to WHY????????

Best wishes....

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

I agree with Liza, Kmeb, Glenn and Joe...
 

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

Don't worry?
 

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

Alprazaom
 

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:)

Hold on, wait a minute, HOLD ON!!!!!!

What catastrophic coverage are all of you talking about???? I phoned the company and I had two distinct phone calls with the customer service people and absolutely asked them the following: Is Alan completely covered for IVIG and will it cost us anything? And the answer was "Yes you are completely covered and NO, you don't have to pay anything?

Now you are saying we have to pay towards catastrophic coverage????

We live on $900 a month after the rent. There is no money for anything else, no movies, no vacations, no nothing.

Nobody said anything to us about contributing toward catastrophic coverage. If they bill us I'm dead!!!!!

mel

P.S. I just went to drugstore.com to check out alprazolam and they want over $200 for 120 pills. Costco cost us $12.00.

here, check it out.
http://www.drugstore.com/pharmacy/pr...291&trx=1Z5006

hold on. I looked up xanax and saw the generic version (same alprazolam) and it's 14 bucks.
http://www.drugstore.com/pharmacy/pr...001&trx=1Z5006

Am I nuts, or are there two different alprazolams here?
I'm having a senior moment.

Alprazalom
 

120 tablets, 1 mg, generic for xanax (alprazalom) - just under $15.00..... www.drugstore.com..... (I take it to stop my legs shaking at night) Medicare plan D doesnt cover it - if you dont have a prescription those are the sites that charge you a small fortune! (I just looked at your link - you are looking at the 24 hour long acting version which I think is new)

I think the surgeon [no names were safe :) ] would finish up walking away very depressed with a tension headache :D :D

You're right. never knew there was a 24 hour xanax.

The way I'm going with the stress, I'll probably never make it to my 60th birthday in November. I'll be on 24 hour, 48 hour, all the hours in the week!!

And I never even take an aspirin!!!!!!

All this ivig and catastrophic coverage stuff will do me in.

Honestly, I don't understand this catastrophic coverage.

I do know one thing. If the customer service people told me that everything wa covered and then they come at me with some bill for $100,000, I'll lose my mind. And I know that this is going to happen because it happened with Alan's cardiac rehab.

We got it pre-approved, pre-certified, pre-authorized, I phoned everybody known to mankind, got it all set up.

Guess what we got in the mail 7 months later?. That we owed Hospital $7,800.
I got that taken care of in 5 minutes flat. The insurance guy even apologized to me.

I can just imagine the bill we're going to get now.

At least I can get my alprazolam and I can sleep. You can throw anything at me during the day, but let me have my sleep at night.

bye for now and thanks all of you for the valuable information but if anyone can explain this catastrophic thing to me, I'd appreciate it.
mel

Prescriptions
 

Melody - I don't know if this would help, but in our area of the country, Wal-Mart has certain prescriptions for $4.00. Try this link for more information.

http://www.walmart.com/pharmacy?redi...=Prescriptions

How is Alan feeling this morning? Like this....?

http://bestsmileys.com/bouncing/10.gif

Yeah, Alan is doing fine but I'M NOT!!!!

Let me tell you what happened to me at 2 a.m. Ever get a spasm in your toes, where they start jerking up and you look down at your foot and you think "what the hell is this???" Well, I'm sleeping, I wake up and my left foot is doing this. Some of toes are starting to point upward. Very very uncomfortable. So I say to myself "okay, you've been stressed lately, you are spasming again, just stretch your foot and it will work itself out." I haven't had this in YEARS, but people always get a spasm or two in their lifetime so I thought no big deal. I began having spams over 30 years ago, somtimes in the upper muscle of my chest. Once in a while I would get the toe thing. But this happened maybe 3 times over the years. The chest spasms happened when I was in my late 20's. I knew when one would hit and bam, then it would stop. The doctor told me "muscle spasms". And if anybody read my response to luin and his bladder thread, you know what I went through for 4 years with bladder spasms. Haven't had any of them for 10 years.

Well, when I went to stretch my left leg, the spasm shot upward and the pain in my leg, well let's just say, it wasnt' good. I stopped moving and tried to quiet myself (all the while thinking, oh my god, now I have distonia).

So I take my right foot and press down on the toes of the left foot hoping it will relax whatever was going on. I then swung over and put my feet on the floor. Couldn't walk for a minute, The spasm had to abate. It did. I then took a hot pack that I microwave and I then took the hot pack, wrapped it on my left foot, laid in bed, (oh, I took a half of alprazom, figuring it would "relax me") and sure enought in two minutes I was fine and out like a light.

Can this be to stress or nerves??? I'll be asking Dr. Fred soon but I just want to know. I'm going to google spasms. Thank goodness for that.

Anybody know anything about spasms??. I do have PN in the tips of my toes but have never heard of PN giving spasms.

thanks
Melody

You may not have
 

Mel,

Don't worry...you may not have to worry about Catastrophic coverage. All insurance plans are diffferent. Some have a very large deductible before the coverage kicks in and that is called a "catastrophic" plan. You probably do not have that plan with Empire. Check your policy. I'm sure if the customer service reps stated that IVIG was covered at 100%, yo9u don't have to worry.


Ann

magnesium....
 

Mel.... diuretics (which you take) deplete magnesium. Low magnesium leads
to leg cramps. Also potassium-- if you don't eat well for just a couple of days
you can get low in potassium too. Low potassium also contributes to muscle cramping.

Did you run out of Xanax? Did you not take it and then get the cramp?
This would be a typical type of withdrawal, since you use it regularly.

I don't think extended release Xanax is for you or Alan. It is basically for
people with chronic anxiety who need all day coverage. Benzos have to be used carefully, and as little as possible in the "elderly" population.

Melody,

If you don't like or can't take the Xanax, you can always ask for Klonopin. I was prescribed that for small fiber PN when all else failed. It's longer acting and you don't have to take 3 pills a day. At least I didn't. I have taken .5 mg once day for two years now and it took the roar of PN down to almost nothing. But that's just me. :) Valium is another you could try. And when I took Magnesium for leg cramps all it served to do was to give me the "trots"! Benzos get a bad rap and I don't think they should. If used appropriately, they have their place and I thank God my Neurologist eventually prescribed them. And trust me, I tried every med known to man PLUS magnesium, potassium, and the B's.

Hi all:

Well, I don't take magnesium and I don't eat Bananas so I don't know if I have a magnesium deficiency or a potassium deficiency. I do know I had a complete battery of blood tests three months ago and my numbers were spot on, everything A-ok according to Dr. Fred who reviewed my tests (from Cornell). He will take all new blood tests in April.

And Mrs. D. I have not stopped taking my xanax for sleep. I take two 1 mg pills, it takes about an hour to 90 minutes for it to kick in. I get a little drowsy and I just drift off. No major anything. I wake up just fine the next morning. Thank god for this.

And thanks for the information on the catastrophic coverage. I do hope I don't get any surprises from the insurance company. I'm calling them just to make sure.

Alan and I don't use any anti-anxiety meds during the day. We only take the xanax to sleep. He needs it for his pins and needles (even though the cymbalta helps), well, since he has the problem when he lies down, the xanax would kick in and he'd be off like a lamb. He DID TELL ME OVER BREAKFAST THIS A.M. that "melody, I know it's too soon to be feeling like this, but I am better with the PN". I said 'oh how wonderful".

As soon as Costco sends me back my prescription for Xanax, I'll do the drugstore.com thing.

Oh, I questioned Alan more about what the back guy said with the sural nerve biopsy and I told Alan that a sural thing is only for diagnostic testing and he said "No, maybe I didn't explain myself exactly right". It seems the back guy said "if you get a nerve biopsy and we send the piece of the nerve back, we can absolutely find out what is wrong with you and maybe we an fix it" That's when he went into the mathematics of "Let's say I do 100 nerve biopsy and I can help 70 people out of the 100, you might be one of the 70 people or you might be one of the 30".

So I said to Alan "Oh, he is looking for other stuff besides CIDP in the nerve biopsy?" and Alan said "yeah, I think that's what he meant"

Alan is not jumping into any nerve biopsy at the moment so I can relax about that. He is going on the boards and reading all the postings about the sural nerve so at least he's getting involved in his own diagnosis.

He said "we'll go and see Dr. Goldfarb and listen to what she says".

So just for an update on my Alan, he just went to make a wash, he had a good night's sleep. (better than me obviously, with my toe spasm thing). Oh, as we were having breakfast in Dunkin Donuts, my right arm (the muscle) began doing it's thing for a few seconds. I just looked at it and said "oh there it goes again. Then it stopped and now all is quiet.

I think my body is trying to tell me something. Nervous tension, stress, well, eventually, it all comes to a head and it affects the body in various ways.

I think, perhaps (and I may be wrong), that all this week, with Alan being in the hospital and me having to go back and forth with the access-a-ride, waiting outside for an hour in the cold all the time, coming home to an empty house, (we have no actual family to visit), and then sometimes someone would ask about my son (and all the memories come flooding into my brain), well I think my spasming is all due to nerves.

Is there a specific tests they can do to see why I'm spasming? I looked up muscle spasms on the internet and so many different stuff causing muscle spams, I was just boggled. I have quite an imagination so of course I said "oh my god, I've got distonia (Remember the movie Resurrection with Ellen Burstyn). I said "oh no, I can't deal with this).

Fear gets a hold of you sometimes and while dental phobia has ruled my life all my life, I did get a handle on this and found a phobia dentist. I don't have any other phobias. Perhaps I'm neurotic, perhaps I'm not.

But I do know if I get another muscle spasm like I had last night, well, I don't know what I'll do. Maybe rub some tiger balm on it!!!!

Just bought some at the .99 cents store. Imagine finding tiger balm for .99 cents. I've paid $4.99 at my local drug store for that product. It's really good.

Thanks for all the information.

By the way, I just got off the phone with his medicare advantage plan. Got a nice girl on the phone and I explained that I wanted to make it absolutely clear to me, that we would not be responsibe for any co-pays for the ivig. and this is exactly what she said: (and if this helps any of you out there, go for it!!!!!)

She said: "I just looked up your husband's plan, he has an excellent plan, there is no co-pay for any of it". Then I told her "what about the donut (sounds stupid I know but she completely understood)!!! Her answer: "OH, the donut only applies if they put the ivig under his Medicare Part D prescription plan". I then said "but IVIG is a drug isn't it?" And she said "well, yeah, but if they put it through under his medical plan, it is completely covered, if they apply it via his prescription coverage, that's where the donut comes in".

Now, I'm not a brain surgeon but neither am I a dumbell. I know these things are written and presented in a way to make all of us think we don't have a bat in our belfry so I again said the following: "So what you are saying is that his neurologist has to bill THIS WHOLE THING, HOME INFUSION, IVIG MEDS, EVERYTHING, through his medical plan, AND NOT HIS PRESCRIPTION PLAN, is that what you are saying??" And she said: "Exactly". I said "well, I would think his doctor would know how to do this, because she knows we can't afford this and she said "don't worry, you won't have any co-pays" and the girl said "don't worry doctors know exactly how to bill this and if she said this, then she will bill it through your medical plan, and not your prescription plan. So that means your husband is covered for everything including home infusion, the people who come to your house and the ivig meds",

So the next time we have the visit with Dr. , ya think it's a good idea to gently ask "you do know to bill this through his medical plan, right??" I dont' want to sound pushy but one would think she knows what to do, right???"

jeez, I acted like a medical secretary today and Alan is making a wash. If he only knew what I do for him!!!! (Oh he knows, I know he knows.. lol)

bye for now.
Love, Melody

I'm a lady...........!
 

I have just realised from Melody reference to my "bladder" post above that you may think I am a "he", in fact I am a "she"!

Interesting that my posts give the impression I am a bloke not a lady!!!!!!!!!
Lupin

Ah, Lupin's a lady!!!!

I did indeed think you were a bloke and I have no idea why!!!!

Funny, when we don't use male or female names on these boards, no one knows who we are posting to!!!!

So you're a gal!!!! cool

Mel

magnesium....
 

There is another reason, Melody, for you to watch your magnesium:

http://healthletter.tufts.edu/issues...magnesium.html

Consensus now for diabetics, is that magnesium is vital.
(irrespective of diuretic use).

Right now I am testing out a new ionic magnesium, and so far it is working
well. You can read about it at my magnesium thread.

Magnesium is often misunderstood by doctors, and often ignored:
http://www.mgwater.com/diabetes.shtml
Serum measurements for magnesium, are not accurate unless very high or very low. One can be very deficient in the cells, and show a "normal" level
in serum tests.

Since you have financial burdens, solutions may be very inexpensive using
BEANS
3 oz unsalted almonds = 270mg
Greens
brown rice
as examples.

Even if you got off that diuretic in your blood pressure pill, you would have problems since you are diabetic.
Also by reducing your Zestoretic, reducing the Zestril part, you have reduced your potassium sparing portion, since lisinopril conserves potassium that the HCTZ depletes.

I am sure zorching around back and forth to the hospital put a strain on your muscles to some extent, plus the stress, which contributed.

Taking 2mg of Xanax (alprazolam) at bedtime is quite a lot. Why you need so much to fall asleep should be probed. Normal magnesium levels are calming and falling asleep normally would follow from normal levels.

People like you in a pinch, with limited resources are always falling victim to
dietary losses. You may be thinking you are doing a great job, and you probably are in certain areas, but others may be neglected. And as long as our medical system further neglects these areas for you, you can remain clueless.

Yeah, I know that 2 mgs of xanax to go to sleep is a lot. I discussed this with Dr. Fred. He said "well, you are under a lot of stress so I completely understand why you use Xanax to sleep, it relaxes your body".

If I didn't take anything, believe me I would never get a good night's sleep. I would be lying there till 4 a.m. I've done this and it always happens. Only once in a great while, if I am absolutely exhausted, do I go to sleep without anything. I will look into the magnesium thing!!!

I've been this way since I was a baby. My mother told me the reason she never had another child was because I never slept.

When I was about a year old, my mother brought me to the doctor and he told my mother to give me a teaspoon of wine before bedtime. (this is a true story). My mother did as instructed and she said I slept all night long. It was the best night's sleep my parents had also.

Well, the next night they gave me a tablespoon of wine, and guess what??? She said I danced in my crib all night long. There must be something in my nervous system that doesn't shut down when I go to sleep. Researchers say they really don't know why we need to sleep, we just do!!! I read that the other day.
They are still trying to find the reason that a human being needs sleep.

Me???? I have too much on my mind. Before there was such a thing as ambien, lunesta, whatever I would sleep for 2 hours, and get up, go back for 2 hours and get up. I did this ever since my son was born. He slept but I was obviously a nervous mother. And the problems we had with him growing up, just added to my stress.

So some years ago, Dr. Goldbetter prescribed Ambien for me. Do you have ANY IDEA WHAT IT FEELS LIKE TO BE ABLE TO SLEEP THROUGH THE NIGHT, when you have never done that? I remember telling my doctor, "what a gift you gave me'. Then the insurance wouldn't cover it any more, and he gave me lunesta. That worked for one week. It did absolutely nothing after that.

I could cut down to 1 mg of xanax, take it at 8 p.m. and maybe by 11 p.m. I'll get drowsy. I only take it at other times if I have a dental appointment. I could not go otherwise, I'm a dental phobic. I'm very careful with meds. I used to be on 8 oral diabetic meds a day and now I just take my shot of lantus (I'm down to 30 by the way) and my high blood pressure pill.

I would love to be like my husband (before he had the PN), he would say "I'm going to sleep now, put his head on the pillow and in 30 seconds flat, he'd be out like a light. I have never been able to do that in my life.

I have a sister-in-law and many friends who are exactly like me. My sister-in-law takes trazadone (for many years now) besides other stuff because she can't go over a bridge, ride in a car (she can ride in buses) she gets too stressed out if she flies so she takes an ativan. Alan is nothing like that, neither am I. But man of my friends who are my age, well, they don't sleep. And they won't take anything. They think it's a crime to take a pill. Me??? I did the guilty thing a long time ago. Like I said, throw anything at me during the day, I'll deal with it. But when you are lying in bed and you have insomnia, well it sucks.

I called up drugstore.com and they told me how to do it. So thankfully I do have another source. I will try and go down on the xanax. What about this new Rozerem thing? They say, it works, it's not addictive and you can stop anytime? I'd love to get samples from Dr. Fred but he said they don't give out any samples.

Anybody try this Rozerem????

Mel

I would not cut down
 

on the Xanax without supervision and a taper schedule from your doctor.

You don't know how complex, and unpleasant it can be! It can take months to change a Xanax dose downward for chronic users.

And I think you are missing my point.... proper magnesium levels lead to
better and more complete sleep.

The first symptoms of removing the Xanax could be more muscle cramping.
Using benzos for this purpose is an upward spiral...you develop tolerance and
have to increase. That is how you got to 2mg.
1/2 of a .25 knocks me out ( I use for airplane flights and dentist).

Please do be careful.

I see what you mean. So I will go from 2 to one a half tonight.

Some years ago, I was on Xanax for one year. I took a .05 every night.
I did it for a year Then for some crazy reason, I decided "no more xanax". Don't ask me why, I don't remember, but will say I remember not having any ill effects. I just stopped. I didn't take it for one whole year. Not that I slept great. I went right back to the falling asleep at 1 a.m. sleep for two hours, getting up, etc. " But I was stubborn and didn't want to depend on any meds.

I will look into the magnesium thing. I'll do a search on your postings (so you don't have to do the explanation again) and I'll find out what kind of magnesium you use. I do know my girlfriend takes magnesium citrate for her restless leg syndrome and she swears by it. It makes her go to the bathroom also. She always said to me "melody if you are going to take magnesium, it has to be magnesium citrate". She would drive me nuts, lol with the magnesium citrate thing.

Oh, Alan is having lots of pain now. He just tried to lie down to take a nap and I had to massage him. It didn't help. He said "how on earth can my PN get worse, it's never been this bad". Then he had to stand up to relieve th pain. I simply said "Maybe this is what they mean by an exacerbation????" Maybe the nerves are healing and they have to hurt before they get better???" I've read this on the boards.

Boy, this PN sucks big time for many many people!!!!

mel

p.s. YOu use one half of a .25?? jeez, that wouldn't affect my little pinky. Does a person size have anything to do with the amount of xanax. I'm not a small person.

and thanks for the info on the xanax. I do listen, believe me. It's much easier to pop a pill than it is to lie awake all night. But it's not good to be on them because I know you have to go higher. My sister in law (on the trazadone, well they have to keep making it stronger every year). I never knew. I never even heard of trazadone until she mentioned it.

I once asked my former doctor "why not put me on trazadone so I'll be in better moods all day long and I'll sleep at night, after all, my sister-in-law is on it (so's my son by the way)??. My doctor simply said "no, you'll get too drowsy during the day), so that was the end of that discussion.

Tidbits
 

Mrs. D., thanks for all the info about magnesium - I slept like a stone until I got PN - now its so hard with nerves firing all night etc... gotta try something new.... !

Oh, just so can explain, I only started the 2 mg of xanax about 10 days ago, I had been on one and a half for over a year.

Tonight, I go back to one and one half. Should be no big deal. I'm only on the 2 mg for 10 days. I'll either spasm my head off or I'll go to bed at midnight.

Alan could not lie down any more, His PN was driving him nuts. I massaged his calves and feet (of course this worked) but he had to get up and walk around. No problem when he does this. This PN (in his case) is very territorial, he has problems sitting or lying flat on his back. He can walk around, exercise, and move, with no problem. How very odd.

I could have sworn it would be the back that would have turned out to be the culprit but so far 3 back specialists have said no. I don't think we are going to go to any more back specialists.

So we'll wait and see when he starts his home infusion thing.

be well,
OH, by the way, thanks for the info on the ways to get magnesium. I eat green beans all the time and I live on greens in salads. Every day, twice a day, so maybe I'm getting some magnesium after all, but not the amount I should be getting.

Will look into magnesium supplements.
melody

check my mag thread on Vitamin forum here...
 

It is on the first page.

I am doing a trial on a new product, which I had stumbled upon visiting another
forum (no not "that" one) ...

And so far it is very nice. Ionic Fizz Magnesium Plus. I am very interested
in effervescent technologies for drug delivery, and this product appealed to me
since I do love my AlkaSeltzer. And because I am very sensitive to the laxative effect of most mag products, including SlowMag.

I have been using 1/2 scoop (it is a very SMALL scooper BTW), for several days now, and notice a distinct improvement in my tense muscles. I have a tenacious twitch in my left calf, which is gone now. I have had a creeping increase in leg cramping in the early morning, too, which is very bothersome.
You mix this powder into warm water, and drink. So far I am using it after breakfast, at 1/2 scoop.

Effervescent drugs tend to be absorbed very quickly into the body from the stomach (unlike other dosage forms). So I was intrigued by this product because of that FIZZ factor!

Next week I am increasing to one scoop/once a day. Like I said...this is the smallest scoop you ever saw! 1 scoop is less than a teaspoonful, I'd guess.
It has other vits in it too, including silica...which is good for tendons, (which I need also). I have a link on the Vitamin forum to it...on the mag thread which is on page one.

I am always looking for tolerable magnesium sources. I am very sensitive to the laxative effects, because of my congenital GI defect. For others, this may not be such a high criterion, but I figure if I can tolerate it, and it works, then ANYONE can tolerate it! LOL

Mrs. Doubtfire:

What would we ever do without you???

I hope we never find out!!!!http://bestsmileys.com/flowers/1.gif

Melody

I googled the magnesium fizz thing and this link came up!
http://www.nutritionexpress.com/prod...S5-03101&Add=N