Hi all.

We just came back from Dr. Goldfarb. I got the results of his EMG and will post the paragraphs here for you to peruse and give me your comments.
She also is sending him for a lumbar puncture (she said that if he has the foot surgery, she's hoping they can do the lumbar puncture at the same time). We'll find this out on Thursday when we go and see Dr. Baird. She says Alan has both small and large fiber neuropathy. From reviewing his blood tests she saw some markers so she is definitely not ruling out auto-immune, but she is definitely being thorough. She also gave him samples of Cymbalta. 3 weeks worth. She knows that he went off the lyrica because of the fluid retention.

She said, if they do a lumbar puncture and they find protein, she will send him for IVIG. (I don't have any knowledge of what this is, I have to read various threads on this and update myself, because I know many of you have done this).

So here is what it says on the Emg report.

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59 year old man with pain in the legs and prior diagnosis of neuropathy. A prior electrodiagnostic study (5/03) Beric) revealed absent bilateral sural and tibial responses, reduced bilateral peroneal compound muscle action potential (CMAP) amplitudes, right ulnar and median distal latency prolongation. The right ulnar and median sensory nerve action potentials (SNAP) were reduced with an abnormal right transcarpal study. This electrodiagnostic study is performed to further characterize the polyneuropathy, evaluate for interval change and assess for a lumbosacral radiculopathy.

Impression: There is electrodiagnostic evidence of a moderate sensorimotor polyneuropathy affecting the legs and right arm. There is electrodiagnostic evidence of a moderate right median neuropathy at the wrists (carpal tunnel syndrome). There is no electrodiagnostic evidence of a lumbosacral radiculopath.
In comparison the prior study (5/03, Beric), the right median sensory nerve response is now absent. (Numerical report was not available).

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Now there are other pages included in this report with all numbers and charts, etc. I have absolutely no idea what they mean because I'm no professional.

She also told Alan that he could have surgery on his carpal tunnel in his wrists but he vetoed that.

And she didn't know why they did not give him a 3 hour glucose tolerance test the last time because that is what she ordered (they only gave him a one hour test) so tomorrow morning he goes at 8:30 .m. for the 3 hour Glucose tolerance test along with tests for QUANTITIVE IMMUNGLOBULINS, SPEP,IFE, and other things (I can't read her handwriting).
She's obviously being very very thorough.

So there you have it.
bye for now.
Melody

before worrying about IVIG. For me, it was the spinal fluid test that clinched it. That is, in determining an auto-immune connection with the progression of my neuropathy. The IVIG stopped it and there have been teeny bits of improvement over the years using it.

Good places to start are at: www.igliving.com a publication put together by a distributor of IVIG w/support from manufacturers for patients and families using it. Start with the oldest issue features first and go to the current ones and you will get a head full of good info in a progressive sequence about it. IVIG is used to treat a LOT of auto-immune and hereditary conditions!
Other wise, just 'web' up IVIG and you'll find enought to boggle your mind.

As for insurance, it won't be given to Allan until all the paperwork hoops have been navigated! In my case, once I meet that old catastrophic annual deductable, and make the payments, it's all COVERED! Most insurances will cover providing the docs make the right case...if not, some financial aid is usually found thru the doc's or hospital staffs. The hoops are there as it's expensive stuff and it's not given willy-nilly experimentally.

Hope this helps as a starter - j

So I gather that you are saying Alan really should have the Spinal Tap because that will really tell the tale, right?

Well, all I know is that after we pay the rent, we live on $950 a month which has to pay for all food, clothes, (who buys clothes anymore), utilities, ALL CO-PAYS, there are no incidentals, (we gave up going out or going to dinner or going on vacation a long time ago.

Alan has Blue Cross Midiblue insurance which I am going to call right now.
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Okay, just got off the phone with Alan's insurance company, a medicare HMO.
I explained that Alan has been told he needs a spinal tap. And if they find protein, he will need IVIG treatments. She replies "I have no idea what IVIG is". I sigh and politely say: "All I need to know is, Does Mediblue pay for IVIG treatments?"

She says to me "What are the procedural codes and diagnostic codes for IVIG" I respond. "honey, he hasn't even been told he needs it yet, I just want to know if you cover them".

She responds. "well, unless we get the procedural codes and the diagnostic codes, I can't tell you anything". I asked to speak to a supervisor:

What it boils down to (and she was very clear about this)!!!!!

Alan goes for a spinal tap. If his neurosurgeon feels he needs IVIG, she will know the diagnostic codes, and the procedural codes, she will then call up Empire Blue Cross, Blue shield Mediblue and request that he be given IVIG. They will look up their allowances for these diagnostic codes and if it comes up positive for neuropathy, then it's a go ahead for IVIG. I said to her "Oh, I understand, you mean, you might allow the treatment for a person with Multiple Sclerosis but not for NEUROPATHY!!!
She said "Exactly!!!". She also said 'if it's an investigational treatment, like a new treatment or a rare treatment, then we won't cover it". I told her "it's neither investigational, nor is it rare, and Peripheral Neuropathy has been around for a long long time but you are telling me now that you can't tell me anything until you have the diagnostic codes and the procedural codes, am I right?"

And she said "absolutely".

Then I went "AHA, if the doctor has the codes, he must have gotten them from you, so you MUST KNOW THE CODES".!!!!!!

She goes: "Oh, no, the codes are standard all over the place, everybody uses the same codes, so if you can get the diagnostic codes and the procedural codes, you can call me up and I can tell you if we cover IVIG".


I just went on the internet and found a website for codes for IVIG.

For IDIOPATHIC PROGRESSIVE POLYNEUROPATHY it said 356.4.

Now I gather this is the diagnostic code? I can't get a procedural code because there are tons of ivig treatments for various ailments, but AT LEAST I GOT SOMETHING.

........this journey is just beginning, I can tell.........

mel

in the intro to 'Hitchhiker's Guide to the Galaxy' DON"T PANIC!!!!!!!!!!!!!!

Right now, there's little to indicate a CHRONIC or PROGRESSIVE aspect, as in my case....Let the docs do all the tests, decide and sort thru a super heap of where's, whyfore's and what's....and ALSO let the DOCs deal with the approval processes SHOULD it come to that...THEY will help you thru all the HOW's should it need to be....The odds are against it, for the most part.
Melody, dear, you are trying to create bridges to cross when there may be NO NEED! I went thru the maze in my PN diagnosis...I went thru it AGAIN during my Cancer's diagnosis and treatments... Believe me, the PN while harder to educate yourself on...was a far easier route! Fewer variables, believe it or not... The cancer testing varied due to the:Stage, Level w/in stage; Markers, and surgery biopsies....THAT DOESN'T Happen w/Nueropathy tests and diagnoses...only 'waits' for tests results and then 'waits' for what other tests mite occur... YES the WAITS are killers, but, believe me, OTHER WAITS are far, far worse?

You have heaps of good things on your side! First - docs that know you, don't discount you a 'loony-tunes' as many here have experienced...Second-
your docs are or, seem to be, doing everything in the Liza Jane Chart proscribed method of 'going down da list' in terms of actual diagnosis[es] and LAST - most important you've a BC type insurance....They are leaders in IVIG theapy inclusions and while may be 'squirrelley' seeming to mere mortals...well, when docs can document NEED, they comply...Even Empire...

FOR NOW, DEAR LADY! Don't fret yer mind about it, untill all tests are DONE and done in sequence and done right and the whole JURY gets IN! You don't really know where you are in the process to panic...Don't expend energy until you need to! When or IF you need to...well, save it until then, Lower your own stress to keep your own PN from getting worse... Use that adrenaline when and where it's truly needed...

Hugs and good thoughts until...let's just sit on the side and try to only 'vibrate' verry gently until there's need to REALLY vibrate? - j

In the meantime, just simply take care of Alan!

First of all, don't worry about my PN, it doesn't bother me one bit. I would never know I had it if she didn't do the tuning fork on me.

I did call the Blue Cross Blue Shield people and I'm glad you think they are leaders in ivig BUT they looked up the code and told me point blank on the phone. WE DON'T COVER THIS FOR NEUROPATHY.

Ain't that a *****. She also said. "well, you could appeal if it becomes necessary but this is still in the investigational stage and we don't approve it.
Now if he had Myasthenia Gravis, then he would BE APPROVED. But not for neuropathy.

See I'm not the type of person who can just sit back and do NOTHING. Never have been. I want answers.

Alan has been on a journey to find out why he has the neuropathy for 18 years. This is the end of that journey. The spinal tap (as Dr. Goldfarb put it), will tell the tale.

Alan is not sure he wants to go through with it unless they do it while he is under the GA for the foot surgery. Makes sense. I mean, why do it at another time, when he's going to be in the hospital for the feet, right. They can simply call down a guy and he can do a lumbar puncture. But don't know if they'll do this.

You might think I'm going overboard on this PN thing but think about it. Alan has been fighting this uphill battle for 18 years. He got relief with Dr. Theirl but every single doctor dismissed his pain. Now he has Dr. Theirl, Dr. Fred and now Dr. Goldfarb. To me, this is a blessing, I know.

But if it turns out that he needs the IVIG and the doctors have to go through hoops to get him this, well, I'm not sure if Alan is the type to say "Okay, let's go through hoops".

He is a very quiet man who just goes to yoga class and makes me laugh. He is absolutely not pro-active in his research on PN. I have done all the work. He doesn't know how and doesn't want to learn.

I'm hoping he gets the spinal tap. At least we'll know if it's an auto-immune thing definitely, right, (if they find protein in the fluid). At least that's what Dr. Goldfarb said.

I just hope this is not another dead end for this guy. He is hoping for some definitive answers.

He's in a depression over our son and he'd like to have a little hope here. When she mentioned the ivig, he kind of perked up.

Jeez, you would think that once you have a medicare HMO, you are covered for everything???? I guess not!!!

mel

First, they will be looking for autoimmune markers both in the spinal tap and in the other blood tests that were ordered. (The immunofixation and SPEP--serum protein electrophoresis--tests both look for rogue antibodies.) Even if they don't find excess immunglobulins or banding in Alan's spinal fluid, he may still have autoimmune issues--there's a lot we still don't know about how the immune system works, and there may well be autoantibodies unique to Alan that could not be picked up by standard testing. Indeed, it is speculated that many "idiopathic" small-fiber neuropathies, and some larger fiber ones, are autoimmune in nature, but we have not yet progressed to the point of being able to identify the antibodies responsible. Even the KNOWN autoantibodies to nerve, such as anti-MAG (myelin associated glycoprotein), the anti-sulfatides, and the various others, have only been isolated/identified in the last few decades.
In my conversations with Drs. Latov and Chin, they've mentioned they believe we will find others that may explain many more neuropathies (and their lab, of course, has been at the forefront of doing that research).

Dr. Latov is a major outspoken advocate of using IVIg for neuropathy, and Dr. Goldfarb knows him well, so I'm sure if she thinks there's an indication for it in Alan's case, she will make a case to any insurance company, and will have a lot of research material available to back it up. In fact, consider this excerpt from Angela Macropoulos' article on neuropathy--one of the ones I, and some other people I'm sure would be familiar to you, were interviewed for; the whole article can be seen at--

http://jscms.jrn.columbia.edu/cns/20...los-neuropathy


Neurologists who specialize in the disease are frustrated that health insurance plans increasingly rely on evidence from blinded controlled medical trials before they will cover treatment. With peripheral neuropathy, there aren’t enough blinded controlled trials to draw evidence from. Dr. Norman Latov, also of Cornell University, has diagnosed several patients with demyelinating polyneuropathy but their insurance would not cover treatment.
“’Evidence-based’ guidelines is doublespeak because guidelines use evidence selectively,” Latov said. “Clinical treatment develops through experimentation and observation. We need to do what we need to to help patients.”

This fight to get IVIg for patients has been going on a while, primarily because it is a very expensive blood product. Nevertheless, should it come to that, I'm sure you'll have good advocacy. (That includes us here.)

Hi.

Alan just came home from the 3 hour glucose tolerance test and said they took so many vials of blood but couldn't understand one test. Something with the initials HV.

They called Dr. Goldfarb's office but couldn't locate her. So I have no clue what this HV test is for. It's not an HIV test, that much I know.

Anway, I know that I have advocates on these boards. And thank goodness for you guys. I've learned much.

But you don't have to worry about Alan. If this guy can do a flamingo position in yoga, lay on the bed with his head on the pillow, his butt sticking up in the air, and one leg straight up, then this guy is not on any downward spiral.

I do believe that it's auto-immune and thanks for all that information. It's so necessary to try and understand what they are looking for.

And if it is indeed deemed that Alan needs some kind of IVIG treatment, and the HMO says "NO". THEN THEY DON'T KNOW ME, NOW DO THEY????

Off with their heads!!!

Hi Melody,

Just chiming in - but agree - dont worry - the docs - if they think Alan might benefit from IVIG - know how to get it for him....

I have no auto-immune markers, blood or spinal fluid, yet my doc got it approved immediately!

Now go whip him up something yummy to eat!!!!!

I just had to respond.

You guys are gonna LOVE THIS!!!

As you know, today I phoned the people at Empire Blue Cross and questioned them and was told I needed certain codes, and they looked at their code thing and told me "no, it's not covered for Neuropathy".

So I said to myself "hmm mm.

I just received the following e-mail from Empire Blue Cross- Mediblue (that's Alan's insurance HMO). By the way, my legal name is Elizabeth, (Melody is my middle name and the name everyone calls me).

Hi Elizabeth,

I included the Medicare policies on IVIG.
Yes, Idiopathic Progressive Polyneuropathy is covered for IVIG under diagnosis code 357.8.

Sincerely,

Susan Conn
Manager, MediBlue


http://www.empiremedicare.com/nyorkp...l699_final.htm

http://www.empiremedicare.com/benenews/brf00-8/int.htm
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not too shabby, these HMO people. I'm printing out the email, and preserving it.

mel

Ok Mel

Just Out Of Curiousity Is The Insurance Going To Cover The Entire Procedureor Just A Part Of It Or The Whole Thing Again I Stress Caution
My Eyes Are Playing Games With Me Today So I Am Haveing A Hard Time Focusing So I Could Read Your Post
Another Question Is This For Just The Ivig Treatment Or Would They Cover For Plasmapherisis


Doug