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

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

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.

--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???

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

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.