Alan just got his EMG results!!!
 

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.

----------------------------------------------------------------------

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).

-----------------------------------------------------------------------
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

Wait till all the next round of tests are in....
 

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.
-------------------------------------------------------------------------------------
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

As Douglass Adams would say....
 

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

Well, a few things.
 

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????http://bestsmileys.com/angry1/5.gif

Off with their heads!!! http://bestsmileys.com/dead/7.gif

Autoimmune
 

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!!!!!:)

Hi Kmeb, how are you feeling???
 

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
---------------------------------------------------------------

not too shabby, these HMO people. I'm printing out the email, and preserving it.

mel

Ivig
 

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

Hi Again
 

Melody,

I cant believe you got a personal email from an HMO or any insurance company - FRAME IT! Thats amazing!

As far as moi - I'm waiting for the results of my amyloidosis testing - see the specialist this Thursday - we'll see what he says - I'm hanging in there:eek:

I wish you well this thursday. Thursdays must be doctor days. Alan goes to his podiatrist and gets the news "yes, we will operate on your ulcer and your tailor bunion", and yes you can have the spinal tap at the same", or they'll just say "nope, you're not getting an operation".

Seems like all we do (and I mean all the guys and gals on these boards) is go for tests, tests and more tests. What we need is more research into neuropathy and more stem cell therapy success stories.

God willing.

bye for now.
Mel

Psoriasis?
 

As I recall, Alan has psoriasis, right? He had a high ESR at one time, and an equivocal ANA. Based on that, I'd think that what he needs is NOT a spinal tap, but a more exhaustive work up for all the tests listed under connective tissue diseases. Does he have dry eyes and mouth? There were a lot of tests he had never had, and there are connective tissue diseases associated with neuropathy (just ask Silverlady, for instance). If he has a neuropathy associated with a connective tissue disease, he could qualify for IVIG without ever having a spinal tap. Spinal tap is usually to look for specific inflammatory neuropathies. He's had a 20 year history of this already. More likely connective tissue. Also, I forgot--does he have diabetes? Does he take statins for his cholesterol?
I just pulled up the labs you'd sent me, and it says, after ANA "Interpretive note: The above results suggest the possibility of clinically significnt autoimmune antibodies
that may be detected by ENA (Sm RNP, SS A, SS-B, Sch1-70, Jo-1) antibody assay or a dsDNA antipody assay antibody assay or a dsDNA antipody assay'

Did he ever get these tests? Please, Melody, before getting all worried about the spinal tap, make sure he gets the simple blood tests he should have had back then.

Now that Liza Jane has pulled up that back post--
 

--with those test result intepretations, I would certainly agree he should be titred up for the vasculitic autoimmune markers.

AND--if it comes to that, I'm sure Dr. Goldfarb can order the tests for specific antibodies to peripheral nerve. Some of these have to be sent out to specialtyu labs, but I had them done, and so could Alan. These are listed also in Liza Jane's spreadsheeets under "Neuronal Antibody Tests". Obviously, which to order would depend on Alan's reports--does he have only sensory symptoms, or is there evidence of motor involvement (and as I recall from back at the beginning of the thread, the latest NCV/EMG seems to show some motor involvement, even if Alan doesn't have discernable motor symptoms), the kind of nerve irregularities that have shown up, etc.

In keeping with the idea that once one has one autoimmune condition, it's quite likely they are prone to others (look at so many of us), it would behoove them to give him some more serum antibody testing.

I've not had much succees finding a blood test that is initialed HV, though I do know that HV is a designation for one of the human mitochondrial haplogroups common in people of Western European ancestry. I'm not sure if this is what might be relevant (though dysfunction of mitochondrial processes has been implicated in some disease conditions--could it be a propensity to autoimmunity is being looked for?), but I'll keep looking.

I hope with that 3-hour glucose tolerance test they look at insulin levels as well as glucose levels as they go--the rise and fall of each, and the time lag between, is often more indicative of impaired glucose tolerance/insulin resistance than just looking at glucose levels in isolation.

Yesterday, along with the glucose tolerance tests he took tests for QUANTITIVE IMMUNGLOBULINS, SPEP,IFE, and other things (I can't read her handwriting). Maybe one of them was vasculitic autoimunne markers.
Oh, one more important thing. On December 19, Alan had all the blood work done and when we got the results (I remember posting them on these boards), on the last page there was one blood test that had not come back yet.
It said PM-SCL AB SEE NOTE
PRELIMINARY REP0RT, then it said:
"This test is delayed because reagents are unavailable from the manufacturer. Results are expected by 12-28-06. This test was developed and its performance characteristics determined by Quest Diagnostics Nichols Institute. It has not been cleared or approved by the U.S. FOOD AND DRUG Administration. The FDA has determined that such clearance or aproval is not necessary. Performance characteristics refer to the ananytial performance of the test". blah blah.

I think I remember asking Dr. Fred "what is this test for" and he said Scleroderma. At least I think so.
I'm calling today and asking if they got the results of this test.


I know Dr. Goldfarb is being very thorough. She studied under Dr. Lantov.

I will phone her and ask about this.

OH, you mention connective tissue things. You are talking about Lupus, right? He's been tested several times by two different labs for lupus and the doctor told us "Alan does not have Lupus".
Any more connective tissue disease you are thinking about?

What would I do without you guys!!!!!

thanks,
Mel

P.S. No, he doesn't have diabetes!!!
and don't forget, his mother DID have Guillian Barre Syndrome. That has always been ruled out but honestly, if he inherited SOMETHING from his mom, who knows???

No Melody, it doesn't automatically....
 

IMPLY lupus or a whole host of other 'fun' conditions.. THAT IS WHAT GOING DOWN LIZA JANE'S CHARTS of TESTS and thru all the test options is about! EXCLUDING all those 'things'! The key here is Autoimmune vs. toxic or other neuropathies... Diagnosis is a process of EXCLUDING things...not including them..Many muscular auto-i conditions do affect connective tissue, in a similar manner to that of demeyelination in various neuropathies....

A key difference is that with many auto-immune 'issues' the 'condition' keeps progressing....I sure hope, for your sake, that Alan's or your own conditions are NOT progressing...it has to be [and IS] one of the scariest things in the world! Cancer was a no brainer by comparison in my book....at least they could actually DO stuff about it!

My take on what all you are doing and what the docs are doing is all what SHOULD be done...to exclude various problems and then go from there....Sometimes it takes time for the docs to even get Approval to do the next round of tests!... And, your docs are experts in that justification for tests process. Don't WORRY! You shouldn't need to until docs stop doing the further level's tests should some 'hint' indicate a possible next step.

CHILL LADY! You are doing good for now. - j

OH YEAH. It still doesn't make it HURT any less!

I'm chillin just fine, so don't be concerned about me. I'm just glad I had the idea to call up his hmo and find out about the ivig coverage and in fact they do cover him so just in case he ever needs this treatment, he'll get it.

Alan's neuropathy has actually not progressed at all. He still has it but while I wouldn't say it's reversed, it's gotten much more manageable since he discovered Dr. Theirl.

6 years ago Alan couldn't drive because he couldn't feel the pedals. He then had to go on the Fentanyl pain patch because the pain, the stabbing, the burning was so bad. So he went on Social security disability.

Then, through these boards, I found Dr. Theirl, who, when Alan first walked in (weighing over 250) and could barely bend his legs, Dr. Theirl said "oh my god, we have to help this man". Then with all the adjustments, over a period of months, Alan was weaned off the patch.

Now to me, this speaks of a back issue, (but what the heck do I know).

He has not had to take any pain meds of any kind since going to Dr. Theirl.

The severity of the neuropathy has lessened. A long time ago, (before the patch, they tried neurontin, elavil, (which made him deathly sick).
The fentanyl patch (he went up to 125) was he only thing that made him live a pain free existence but he never went to the bathroom and of course, like I said, due to a lack of exercise, his body was so stiff, he could barely move, But after going to Dr. Theirl, all that changed. Dr. Theirl said "you might never find out exactly why you have this but we can make you feel much better and this man actually achieved this (using a G5) machine.

Alan has the neuropathy in 3 toes on one foot and some toes (in between them) on the other foot. He's had carpal tunnel but it doesn't really bother him that much so he won't do anything about that.

And since the neuropathy only kicks in when he lied down or sat up in a sitting position, (not when he walks around), the lyrica did help but he went off because of the fluid retention.

Now he has been on cymbalta for 2 or 3 days and this morning he remarked to me "Melody, I think the cymbalta is working, look, I slept the whole night on my back and my neuropathy is not bothering me". I checked his ankles and no swelling. So for now the cymbalta is doing whatever it's supposed to do for neuropathy.

So from 6 years ago (when his neuropathy was so bad he had to go on a fentanyl pain patch ..... till today, when there is no more patch, or vicodin, well, I assume that means it's not progressing, right? That's a good thing I would imagine.

This Dr. Goldfarb is a specialist in her field. I brought Liza Janes Charts to her and she read all of them and then she whipped out her own PN tests and she said "Don't worry, I know all the tests to give Alan, (this is a Peripheral Neuropathy department at Methodist).

In 18 years, we've been to every doctor you can go to, and no one has done the things, or ordered the tests, and no one has been as thorough as Dr. Theirl or Dr. Goldfarb. So I do have faith that she'll do her best to possibly find out why he has the PN. No guarantee, I know this. SHe told me this too. Too many things cause neuropathy.

But Alan can only take the tests that his insurance covers. So far, we've been lucky. And if you think about it, I'm the one who has spoken to every single doctor, asked every single question, and done all the research. He doesn't know how and doesn't seem to want to learn how. He just wants to go and get it "fixed". He depends on me. Thank god, he goes to the gym and takes yoga. His body is much stronger, he has muscles where I never knew a man could have muscles, and his skin is clear and his color is good.

ANd since he's using the clobetazol on the psoriasis patches on his left ankle and on his elbows (and I put vitamin e there too), they are diminishing too.

So all in all, (and this is just my opinion), his neuropathy is NOT progressing, and maybe this is due to his exerise program and strength training, I don't know. But all his doctors are pleased as punch with his progress.

Now the only hurdle is the feet. WE have to find out if he needs the operation.

I shall update.

love,
Melody

Melody dear.....
 

insurances WILL pay if docs can justify the need...Leave it to them to do so! Rite now, is being SURE your docs are going down/thru the Liza Jane lists and eliminating all other options....Should it BE auto-I you have my heart and soul in terms of support.....it's totallly not a FUN route to go?!! Tho at times we have to do it....we will know where we should BE once we get there?

Should Alans' condition [s] require IVIG... Believe me, your docs will know HOW to get it and how to get it all at the cheapest manner possible....Granted it Ain't cheap! But, life it does go on.....As Wings would say...some things we have to accept? Well, this is one card hand we gotta accept! Don't waste energy on unnecessary stuff....promise?

Please don't ask me about neurontin...it was a death-drug for me! I cannot say how GLAD I am for alternatives! Each of us is truly DIFFERENT! - j

Please keep all things in perspective....I've PN up tomy butt, and on the arms mid-way to the elbows...I CAN at times, actually feel and use paperclips? Keep that all in mind when you complain...it IS all relative?

Hugs - j

Hi, don't understand what you mean when you said: "Don't waste energy on unnecessary stuff....promise?


What unnecessry stuff am I wasting energy on??

I got all my information I need to get. As a matter of fact, two seconds ago, I got the results of the PM-SCL AB and it was negative.

So for now, we have result from most of the tests.
When the batch he took yesterday, well, when they come in, we'll know more. Until then, he won't have a spinal tap, that much I know.

But I have to go with whatever Dr. Goldfarb feels is in Alan's best interest. She'll confer with Dr. Fred and whatever they come up with, well, they'll come up with.

I'm just curious. Can a person have an auto-immune disorder and it shows up late in life, like in their fifties. And if Alan does have some sort of auto-immune something, why would it get better with exercise, yoga and losing weight. Wouldn't it get worse??

We actually might never know exactly why he has this PN but he's doing fine on the cymbalta and he works out like a demon and he never looked better so believe me, I don't lose sleep over this.

There's so much more going on in my own life (like losing a son to Aspergers disorder), this is the reason I do all the research on the PN. Keeps my mind active and it at least keeps Alan a bit more informed than he would normally be. He actually looks up stuff a bit more now than he ever did.

I believe we all have to be accountable for our own health and our own choices in that health care. I mean, if we are able to. If not, then we rely on loved ones.

Alan and I only have each other. So I'm trying to get him to learn stuff and learn how to do research. Just in case someday I'm not here to make him muffins.

love, Melody

P.S. And get a load of this. My cousin's wife had a complete knee replacement yesterday and they wouldn't put her to sleep. They gave her a spinal (not an epidural either), a spinal. I never knew they still gave spinals. She said she heard the whole operation. I told her. "that's all they would have had me do, be awake during an operation", jeeeeez

Thanks, Dahlek, for your support of the charts. Mel--I think we were worried about you expending a lot of energy investigating whether his insurance would cover IVIG when there were lots of things to be looked at before that point, and when even that is something the doctor would take care of if and when.

If Alan has had the tests for auto-immune disorders that were recommended when his first ANA was positive, and his doctor is doing a very thorough work up now, would you share the results with us?

Alan's pn most seems like the idiopathic type, being stable or improving for many many years, but it does seem he needs a connective tissue disease work-up and autoimmune as on the charts.

If the doctor has done all this, great! Can you share the results with us? Or do you feel it's private. That's okay, too, just let us know that, so we'll all stop bugging you.

I thought I did share the blood results with you.

Didn't I post some time ago, when I said "Alan's bloodwork came back".
So far, that's the only stuff I have. Now yesterday, he went for more stuff, like I said. They took blood for QUANTITIVE IMMUNGLOBULINS, SPEP,IFE, and other things (I can't read her handwriting). Maybe one of them was vasculitic autoimunne markers. I have no idea. Do any of these tests have anything to do with auto-immune stuff?

Alan had these blood tests at the end of December. Here are the results again. Dr. Goldfarb ordered these tests. We had gone in and I showed her Liza Jane's Charts and she looked at them and said "oh I know all about these kind of tests, see??? I have my own PN specific tests that I'm ordering so don't worry, I am going to be very thorough!!!".

So here again, is the results of the tests he took in December.

Glucose Tolerance One Hour test - 137 Reference is 70-200

His regular blood test page (the one with CBC and TSH and T4. Free, T3, Total Ferritin, the whole page was fine. Nothing kicked out as abnormal.

His Cryoglobulen,QL W?Rx Cryoglobuin, QL - Negative

His COMP METAB PANEL W/EGFR GLUCOSE - 82

His TIBC was 221 Reference is 250 – 400


FOLATE, SERUM ……15.7 Reference Range >5 .4 ng/mL

PSA, TOTAL …….2.16


ANA SCREEN, EIA W/REFL IFA
ANTI-NUCLEAR AB ……………Negative

TISSUE TRANSGLUTAM AB IGA…..<3 Reference Range <5 U/mL
Interpretation : Negative (I gather this means no celiac disease)

ANCA VASCULITIDES
MYELOPEROXIDASE AB <6 Reference Range <6 U/mL
Interpretation: Negative

PROTEINASE – 3 AB <6 Reference Range <6 U/mL
Interpretation: Negative

SJOGRENS SSA
SS-A AB <or=1.00 Reference Range <or=1.00 INDEX
Interpretation Negative Negative
Antibodies to SSA (RO) and SSB (LA) are
Observed with the highest frequency in
Sjogren’s syndrome, although these
Antibodies are also found in a significant
Percentage of patients with SLE.





SJOGRENS SSB
SS-B AB … .<or=1.00 Reference Range <or=1.00 INDEX
Interpretation - negative Negative

Antibodies to SSA (RO) and SSB (LA) are
Observed with the highest frequency in
Sjogren’s syndrome, although these
Antibodies are also found in a significant
Percentage of patients with SLE.


RHEUMATOID FACTOR <7 Reference Range <14 IU/mL
(Dr said that he does not have Rheumatoid Arthritis)


C-REACTIVE PROTEIN 2.3 H Ref Range <0.8 mg/dL
SM, AB, EIA ……..…NEGATIVE

RPR W/TITER & CONF RFX
RPR SCREEN - Nonreactive

LYME DISEASE IGG, IGM, WB
LYME DISEASE IGG, WB
LYME DISEASE INTERP (IGG) …..NEGATIVE

18 KD (IGG) BAND Nonreactive
23 KD (IGG) BAND Nonreactive
28 KD (IGG) BAND Nonreactive
30 KD (IGG) BAND Nonreactive
39 KD (IGG) BAND Nonreactive
41 KD (IGG) BAND Reactive
45 KD (IGG) BAND Nonreactive
58 KD (IGG) BAND Nonreactive
66 KD (IGG) BAND Reactive
93 KD (IGG) BAND Nonreactive

IgG Western Blots which have 5 (or more) of the 10
Significant bands are considered positive for specific
Antibody to B. burgdorferi. (Proceedings of the 2nd Conf. On
Lyme Disease, Dearborn, MI 1994.)

LYME DISEASE (IGM). WB
LYME DISESE INTERP (IGM) Negative

23 KD (IGM) BAND Nonreactive
39 KD (IGM) BAND Nonreactive
41 KD (IGM) BAND Nonreactive

IgM Western Blots which have 2 (or more) of the 3
Significant bands re considered positive for specific
Antibody to B. burgdorferi. (Proceeding of the 2nd Conf. On
Lyme Disease, Dearborn MI. 1994.)

DNA (DS) ABS <30 Negative

ANGIOTENSIN CONV ENZYME 52
PM – SCL AB see note Negative
PRELIMINARY REPORT -
This test is delayed because reagents re unavailable from the manufacturer.
Results are expected by 12-28-06. This test was developed and its performance
Characteristics determined by Quest Diagnostics Nichols Institute. It has not
Been cleared or approved by the U.S. FOOD AND DRUG Administration. The
FDA has determined that such clearance or approval is not necessary.
Performance characteristics refer to the analytical performance of the test.

Test performed by:
Quest Diagnostics Nichols Institute
33608 Ortega Highway
San Juan Capistrano, California 92690

End of Report
----------------------------------------------------------------------

Now today, I got the last test that was not included in this one, the PM – SCL AB. I got Quest Diagnostic to fax it to Dr. Fred's office and they just told me it was negative.

SO NOW, we have to wait for the results of the blood tests he took yesterday. Now I have no idea if these are more auto-immune or whateve they are but when I spoke to Dr. Goldfarb a few days ago, that's when she said "Melody, I want Alan to get a lumbar puncture, that will tell me a great deal.". So who am I to tell her "no, he's not getting a lumbar puncture, especially if they can do it while he's having his foot surgery (we find out more about this on Thursday).

And don't be concerned one bit about invading my privacy or me not letting you guys in on any test results. As soon as I get test results, I post them here immediately. I've always done that.

See how I titled this thread. I had just gotten the emg results.
I rely on you guys a lot for your wisdom and knowledge.

Is there any more tests that she is supposed to order for him. I gave her the Liza Jane charts and she seemed to understand and she had her own charts and she is a PN specialist. Honestly, I don't know what else to do.

I mean Dr. Goldfarb seems to know what she's doing. I guess she's being as thorough as she can and I think she ordering the blood tests that she knows his insurance will pay for. Anything else, well, we can't afford anything else.

And I'm not worried about any ivig because I found out in an e-mail that his insurance will pay for it.

I'm the kind of person, who, if you have a problem or need to know something, just call me up and I'll get you an answer in 30 seconds from the internet or from a phone call. It's just the way I am.

I'll give you an example. My siser in law loves Dreamgirls. and she loves the way Bianca Ryan sang the song "And I'm telling you I'm not going" . This 11 year old won the one million dollar prize from the America's Got Talent tv show.

BUT.... my sister in law never saw Jennifer Holiday sing it on broadway and that was in 1980. I simply went to youtube.com, found Jennifer Holiday singing it on stage, e-mailed it to my sister in law (took me all of 30 seconds to do this) and she was the happiest sister-in law you ever saw.

I also emailed her videos of her favorites from the Phantom of the Opera, etc. She never knew you can go to YouTube.com and see absolutely anything that was on a musical stage, on a tv show, absolutely anything. She went nuts. She is now watching everything she never saw and it's all on the internet.

So to me research is what I do and to me it's no energy whatsoever. It keeps me from thinking about my son and I'm just better for it

So feel free to ask me any questions about anything. I'm not a private person. You can't have my kind of personality and be a private person. I'm an open book.

So if you think I should ask Dr. Goldfarb if there are more tests, well I'll just run that by her. But I don't want to make a pest out of self with this doctor. She's the most thorough Doctor we've had so far as far as PN goes.

So as soon as I get the results from yesterday's QUANTITIVE IMMUNGLOBULINS, SPEP,IFE, I shall update everybody.

But until then, if you want to find anything about any tv show, movie, or musical just private message me and you'll have it in 30 seconds, guaranteed.

Melody

Mel--
 

--the previous test results that you posted did include a lot of the standard tests for autoimmune diseases that area vasculitic in nature--that is, that involve the blood vessels and most often some version of the anti-nuclear antibody (ANA)--and apparently none of those came up.

The more recent tests--the SPEP, immunoglobulins--are autoimmune tests, but not vasculitic ANA ones. These are to see if Alan's bone marrow is producing any rogue antibodies of a monoclonal or polyclonal kind; these can cross-react with nerve tissue and cause neuroapthy. The monoclonal kind are more ominous; they are often associated with blood cancers, although two thirds of people with monoclonal antibodies have no evidence of such--then the condition is termed monoclonal gammopathy of undetermined significance (MGUS). This condition is somewhat more prevalent as people age--about 1% of people over 50 have some sort monocolonal antibody. And a lot of people with MGUS have an associated neuropathy.

Take a look at these:

http://www.neuro.wustl.edu/neuromusc...y/mprotein.htm

http://www.neuropathymd.org/topical/...Gammopathy.pdf

(Second one is written by Dr. Latov.)

I have confidence in Dr. Goldfarb after my talk with her, and I can always help monitor this through Methodist, if you'd like (my friend Dr. Salgado is her colleague, and of course I mentioned you two in my conversation with her). We all want to make sure Alan continues to be able to body-build. :)

My dear Glen:

You have my utmost gratitude to monitor away on anything you care to monitor away on. You can talk, look at his files, do any little thing your heart desires.

I read what you just posted and if you think I understood one word, well, forget it. I should have become a nurse (like my mom did at the age of 55) but unfortunately I didn't).

So consult, monitor, do any little thing you get any chance to do.

I trust Dr. Goldfarb and of course I trust anybody on these boards.

So, when we get the results of the latest gammablobin (or whatever the heck those things were yesterday), I shall post. Believe me, I shall post.

Oh, Alan came home from his latest yoga class.

He said "I'm a flamingo and a warrior".

I said "I always knew there was something I liked about you".

Then he started flexing his muscles and he lost me!!!

Had to go cook!!!!

will update.

love ya

Melody

I am not surprised to hear that the vasculitic titers were negative. Such a condition seems to go against the clinical data, in that Alan's PN appears to have developed slowly. The vasuclitic conditions that cause PN all seem to be aggressive. I am not aware of any that are insidious. Do such creatures exist?

rafi

Hi there Rfinney:

Can you please translate what you just wrote into english for me. Tonight I'm not thinking like I can understand stuff.

I'm just tired from all this research.
Thanks much.

Melody

In regard to more insidiuous presentations of vasculitic neuropathy--
 

--it is possible for the onset of such neuropathies to be gradual, but you're right, rfinney, most often the onset is acute to sub-acute, and progresses relatively quickly.

There seems to be a bit of an age division here; those who are older, or who have ANA titers that are not as elevated, seem to show more likelihood of a slower, chronic development of symptoms. And, the different vasculitic conditions have variable patterns--neuropathy secondary to lupus or polyarteritis nodosa tends to come on quickly and aggressively, whereas that of Wegener's Granulomatosis or peripheral nerve specific vasculitis often comes on more gradually.

See:

http://www.neuro.wustl.edu/neuromusc...tml#vasculitis

Nevertheless, I agree that the patten that is described for Alan doesn't seem much like a vasculitic type neuropathy, and, of course, none of the recent testing for ANA-related conditions has panned out. It will be interesting to see of the immunoglobulin /protein studies show anything.

I love it when you guys talk dirty!!!!!



lol

I have absolutely no idea what you are saying (with ana titers, etc. etc.)

To put it simply... Do you think Alan's PN is auto-immune, or do you think it's from his spinal stenosis (remember, after Dr. Theirl's adjustments, he's a completely different person.


mel

My broad speculation--
 

--is that it may be autoimmune, but not ANA autoimmune, and given Alan's general level of health now, and the long period of time he's had symptoms, it's probably not due to a monoclonal autoimmunity (gammopathy) either. He may have one of those persistent "idiopathic" neuropathies for which autoimmune mechanisms are suspected, but no known antibodies are found. (As Dr. Latov says, they are likely to one day be discovered--then neuropathies associated with them will no longer be classified idiopathic.)

Dr. Goldfarb may want to test him for some of the known antibodies specific to peripheral nerve, such as anti-MAG, or anti-sulfatide, if the other tests don't show anything amiss.

It's possible it's due to spinal issues--actually, more likely due to compression on nerve roots in the lumbosacral/cauda equina area--but this may not show up definitively, either.

The old standby causes are impaired glucose tolerance--it's now know that can cause neuropathy well before a frank diabetes diagnosis--or some sort of toxic or infectious exposure, but if the latter factors caused it initially, it may be impossible to find those agents now.

Melody,

I agree with Glenn's speculations. Basically, many docs and folks like us on this board think that many, if not most, "idiopathic" neuropathies are very likely to be autoimmune in origin and that down the road the specific antibodies will be identified. There could be quite a few, actually.

In Alan's case, we are saying that his clinical features do not suggest a vasculitic neuropathy, that is, a neuropathy triggered by a circulation disorder. Glenn does point out that there are some vasculitic conditions that develop gradually but there does not seem to be any other evidence that suggests he has such a condition.

In the past few years, I think most practitioners, at least those at the forefront, who diagnose and/or treat neuropathy have come to the conclusion that impaired glucose tolerance, which is now "officially" recognized as a condition in its own right, can trigger neuropathy. I think many are considering the possibility that a significant number of "idiopathics" could fall into this category. So between the two - autoimmune and impaired glucose tolerance - we may eventually see the number of "idiopathics" fall dramatically.

rafi

I got a good question for ya this time!!!
 

Let's say the 3 hour glucose tolerance test comes back and they find out that it shows he has impaired glucose tolerance. Now what the heck does this mean and what do we do about it.

His sugar readings are around 84 (I know he's not a diabetic). But this impaired glucose tolerance is different from being a diabetic right?

So if it is found out that he has this neuropathy because he had impaired glucose tolerance, what do we do about it?

Does IVIG help this?

DOES ANYTHING HELP THIS?? I mean the only time he gets relief (sometimes the cymbalta works and sometimes it doesn't), is well he exercises and now he is doing yoga. This man is almost 60. He can't be doing what he's doing for the rest of his life. He'll bend himself into a pretzel and one day, he won't be able to get up off the floor.

So is there no relief for someone who is not a diabetic but it turns out they have impaired glucose tolerance (am I even phrasing this correctly).

He's going to want to get some answers eventually. I mean, to have all these tests, blood, (possible spinal taps), mri's , etc.etc, then be told "well, we think you might have impaired glucose tolerance (believe me, Alan never even heard of this), I'm just curious if there might be some answers.

Believe me, I know that many of you on these boards have a much much worse of PN than my Alan. I know this and my heart goes out to you.

I'm just trying to be like a pioneer in trying to find some answers that might SOMEDAY help anybody who has PN.

His neuro studied under Dr. Lantov who is somewhat of a pioneer in IVIG and neuropathyies and cells, (I'm not putting this right) but you understand.

We baby boomers are getting older and if someone soon doesn't open up and start some real research into the causes of the various neuropathies, well, what's going to happen to us as we hit our 70's and 80's.???

I mean, they can keep us alive with the Plavix, and antibiotics, and heart meds, and blood pressure pills, but if you have PN, you really want to take a hammer and bang yourself sometimes. This hasn't affected me thank god, but I will never forget the nights when Alan would jump off the bed at 1 oclock in the morning screaming his head off and I had to slap another fentanyl pain patch on him (and I wasn't supposed to slap any more patches on him) but he was in such pain in between the toes) and also it seems there was a really long scratch on the top of his foot (we could barely see it, he must have scratched his foot with the nail of his other foot) but it affected the neuropathy and he went out of his mind. This was before Dr. Theirl. I did not know what to do. He was going nuts so I ran into the other room where we had the patches and I found a 25 patch and just slapped it on his back. That brought him to 125 of the fentanyl. He just went "oooh, thank god". It worked immediately. He said "my foot was on fire". I put cold compresses on his foot and by the time the second patch wore off, the coolness of he compresses did some good. I mean, that night I got a real lesson in what PN is all about and how it can affect you painwise.

I mean, there has to be more than opiates to be the answer to this. Know what I mean?????

Mel

OK, the glucose primer. :)
 

According to the current standards laboratory standards gnerally used in the US, someone who has a 12-hour fasting lgucose level between 65-109 is classified as normoglycemic. If the level is 110-125, they are classified as having impaired glucose tolerance. Above 125, they get a diagnosis of "frank" diabetes.

However, one can well imagine that blood glucose level is affected by a lot of factors--what one has last eaten, when, degree of physical activity recently done, what time of day the blood sample is taken (blood glucose tends to be lowest early in the day), etc. Moreover, the lab levels at which one is given these labels are fairly arbitrary (there's recently been a campaign to lower the "impaired glucose tolerance" category down to 100, for example), so many savvy endocrinologists are not comfortable using this test and these standards to diagnose diabetes/impaired tolerance. Most would rather at least get a set of Hemoglobin A1c levels over time--this measure of blood sugar tends to be more stable--and/or do glucose challenge through a several-hour glucose tolerance test. It's not rare for people with "normal" fasting blood glucose levels, and even "normal" hemoglobin A1c levels, to reveal an overreaction to glucose challenge during a multi-hour test that would lead an endocrinologist to suspect impaired tolerance or diabetes. (I know there were several people on the old Braintalk and at the Neuropathy Association boards who were diagnosed just that way.)

The better glucose challenges not only take a baseline blood sugar level before one drinks the measured glucose beverage, but a baseline insulin level, as well, and then they take blood and measure both glucose and insulin every half-hour for the duration of the test. Insulin and glucose levels interact--insulin drives glucose into the cells, and tends to rise and fall after it, in a time lag fashion--but in people who don't have good natural feedback mechanisms (this could be related to pregnancy, certain meds, or other health conditions in addition to glucose/insulin issues) there may be an overproduction of insulin to a given amount of glucose, driving the glucose levels down too low (reactive hypoglycemia), or an insufficent insulin response to a given amount of glucose, leading glucose levels to rise too much. The latter is impaired tolerance, and could signal developing diabetes. Indeed, even reactive hypoglycemia has an association with future possible impaired tolerance, as the insulin/glucose feedback mechanism has gone out of whack--the body is overproducing insulin, signalling insulin resistance in the cells, and if the body cannot at some point continue to compensate in that way, blood sugar may rise past healthy levels.

The levels that are accepted as being "normal" for blood glucose change during the course of the test. On my Quest results, you are allowed to be up to 159 at one hour, and up to 139 at two hours, and still be considered normoglycemic. At one hour, 160-225 signals impaired tolerance; at two hours it's 140-199. Above 225 at one hour or 199 at two hours signals diabetes. (The figures for pregnant women are slightly different.) As I said, there have been people who had normal fasting glucose levels who showed up with very high levels during the test and who were labelled with impaired tolerance or even diabetes.

I have the test done for at least three hours every year. The highest blood glucose level I ever received was 138 during the first hour. (My fasting glucose is generally in the 90-100 range.) But--my insulin levels tend to rise higher than the normal ranges during the test, and drive my glucose levels down into the 60's/70's during the second to third hour or so before the insulin recedes and my glucose normalizes. This is reactive hypoglycemia, and, along with the insulin levels, signals I have to be careful. It's why I try to keep muscle mass, which helps with insulin regulation, and why I take R-lipoic acid, and why I try to eat a sort of Zone like diet to keep too many wide swings in blood sugar from occurring.

Now, what does this have to do with Alan?

It's been speculated that most of us have some degree of insulin resistance impaired tolerance as we age, given our Western diet and lifestyles--and some of us from Northern/Western Europe may be more genetically prone to it than others. Of course, being overweight exacerbates this. I would think that given Alan's previous history (the weight, the heart issues), he probably had a degree of insulin resistance/impaired tolerance, at least at some point, and it may well have contributed to his symptoms. But, the two of you have made great lifestyle changes for him, and you may have dramatically reduced this, so that if this did contribute to his neuropathy, you may have arrested or even reversed the process. He may not show as impaired tolerant now, even if he once might have, and that's all to the good. (I'm trying to do a similar thing myself.)

Now, does this mean his symptoms AREN'T due to autoimmune issues, or to nerve pressure from the back? Not necessarily. He could be "co-morbid"--all, or any combination of these, could be involved. Neuropathy has many causes and mutliple things can damage nerves enough to produce symptoms. Often there's an "additive" phenomenon--diabetics are known, for example, to be more sensitive to nerve compression effects: a diabetic is more prone to develop compressive carpal tunnel than a non-diabetic, due to the fact that nerves in that area are already absorbing the blow that glucose dysregulation causes, so it's easier to produce symptoms from another casue than it would be in "normals". (I know my neuropathy has left me more prone to compressive effects, though, with its extremely acute onset, it's unlikely to have been caused originally be glucose problems--it's why I'm probably suffering now more form the cervical radiculopathy than someonw without "other issues" would.)

I'm certain Dr. Goldfarb will cover all the bases here, but it may be you never get any single "smoking gun" that explains Alan's neuropathy--he may have nerve assaults from a number of realms that add up to his symptoms.

Thank you so much for explaining all this to me.

Now we have to make the decision to see if he gets the spinal tap.

He has the prescription. I'm not sure what to do with it yet.

Dr. Goldfarb told us to call the Neuro-Radiology Department of Methodist Hospital and make the appointment for the spinal tap.

Since I know nothing about spinal taps, here are my questions.

Do I go with him? Is this the same as having a spinal where you can't pick up your head for 6 hours (that happened to my cousin Billy, they told him don't pick up your head, he stupidly did, and they had to give him morphine, the pain in his head was so bad). So do you go home right after (like after a colonoscopy?).

Is there a recovery period for example (I have to call the access-a-ride for a pickup time). So how long from the beginning of the procedure to when he is allowed to leave?

Thanks much.

Melody