[IH8PN]

Ok I'm sick of sitting around feeling sorry for myself, suffering, and waiting for doctors to run tests. 3 weeks out from a NCS, so in the mean time I need to start pushing for some more testing. These meds aren't doing anything for my pain and just making feel tired and stupid.

So my question is... I'm going over Liza Jane's checklist for Sensory Neuropathy and there is a lot to cover. Are these all tests that can be done out of any lab? (I have Kaiser Healthcare) Is there any reason that they can't be easily done if requested? I plan on contacting my doctor with in the next few days and requesting to knock some things of the checklist a few items at a time. I just want to make sure I know what I'm talking about so I don't look foolish when I demand to be tested and won't take no for an answer.

I'm thinking about starting with Vitamin & Metabolic. B12 is the only thing on that list I've been tested for and it was >1000 also A1c was normal and rheumatoid was normal. I realized I have a long way to go until I'll accept idiopathic.

Thanks in advance for helping me be my own advocate.

[glenntaj]

--can be ordered out of standard labs such as Quest, etc.--although a number of them are unusual enough that many non-specialists may not be aware of them.

There are a few obscure tests, such as the full Epstein-Barr Virus panels, that might have to be sent to specialty labs after a blood draw, but there shouldn't be any problem with a regular lab contracting to do that. (In fact, one of those special facilities is actually named "Specialty Labs" and it's in Van Nuys, California.)

[mrsD]

Were you taking B12 as a supplement or vitamin mixtures when you had that test?

I ask because over 1000 is very unusual for a person NOT using B12 daily. The supplement has to be discontinued at least 5 days before any blood work.

Levels over 1000 indicate some medical conditions may be present.

Some forms of kidney disease, liver disease, intestinal bacterial overgrowth called dysbiosis, and some forms of blood cancer.

Kaiser is an HMO and will have cost features present for any testing. HMOs are highly structured to keep costs down.

[IH8PN]

Originally Posted by mrsD

Were you taking B12 as a supplement or vitamin mixtures when you had that test?

I ask because over 1000 is very unusual for a person NOT using B12 daily. The supplement has to be discontinued at least 5 days before any blood work.

Levels over 1000 indicate some medical conditions may be present.

Some forms of kidney disease, liver disease, intestinal bacterial overgrowth called dysbiosis, and some forms of blood cancer.

Kaiser is an HMO and will have cost features present for any testing. HMOs are highly structured to keep costs down.

I was taking 2500 mcg a day for about a month and a half prior to testing. I can't recall if I had taken any within a week of the testing but I know I ran out before the test. My mom had given my some out of pure coincidence due to initial foot pain. (before any of us had any idea it might be PN, as she likes to share her vitamins) Would that be enough to push my b12 up over 1000? I've been hitting the vitamins hard so it would probably show up high again if I retested.

I haven't had to deal with Kaiser much as I've never even had a primary physician up until 4 months ago as I've generally been healthy. I'm learning the ins and outs though and already finding things that don't make me happy.

[IH8PN]

Originally Posted by glenntaj

--can be ordered out of standard labs such as Quest, etc.--although a number of them are unusual enough that many non-specialists may not be aware of them.

There are a few obscure tests, such as the full Epstein-Barr Virus panels, that might have to be sent to specialty labs after a blood draw, but there shouldn't be any problem with a regular lab contracting to do that. (In fact, one of those special facilities is actually named "Specialty Labs" and it's in Van Nuys, California.)

I'll start with the easy vitamin/metabolic tests and work my way up to the antigen tests and monitor the path of resistance along the way. I've already made it clear to my neuro that things are progressing at a fairly steady pace and I'm eager to find a cause.

[mrsD]

Yes, your use of the B12 for months before testing would have raised you to "new" levels.

On the one hand --being over 1000 after taking the high dose supplement shows it is being absorbed properly and working for you.

On the other hand you don't know where you started from.

I would think your last test reflects the daily use of high B12 doses.

It can take time to come back down. Perhaps a long time. Part of the B12 you took, would have been stored in the liver for a "rainy day".... So if you stop now, it could be months or a year or more before you get really low, if your liver stored what it should.
This is a survival feature for B12, since it comes from animal protein, and early humans encountered times of famine and loss of animal prey, or the ice age, etc.

I think you will find Kaiser not conducive to much testing.
They might screen you for hemochromatosis, which can cause
PN, and other nasty consequences, because they did a study several years ago on all their members and found many hidden patients with this problem. (including some of their physicians!).

But their doctors are bound by internal rules on what drugs to use and what tests should be ordered. You may run into that wall when you use that insurance.

[IH8PN]

Originally Posted by mrsD

Yes, your use of the B12 for months before testing would have raised you to "new" levels.

I would think your last test reflects the daily use of high B12 doses.

It can take time to come back down. Perhaps a long time. Part of the B12 you took, would have been stored in the liver for a "rainy day".... So if you stop now, it could be months or a year or more before you get really low, if your liver stored what it should.
This is a survival feature for B12, since it comes from animal protein, and early humans encountered times of famine and loss of animal prey, or the ice age, etc.

I think you will find Kaiser not conducive to much testing.
They might screen you for hemochromatosis, which can cause
PN, and other nasty consequences, because they did a study several years ago on all their members and found many hidden patients with this problem. (including some of their physicians!).

But their doctors are bound by internal rules on what drugs to use and what tests should be ordered. You may run into that wall when you use that insurance.

I've always consumed large amounts of animal protein. Lifting weights and consuming protein was a big part of my life the past 10 years so I doubt b12 was ever really dangerously low.

On the other hand, I did drink above average amounts of alcohol as well, so I'm sure my liver probably took a beating. I only drank 3-4 times a week so there were some days when I was getting proper nutrition. I wouldn't be surprised if that has led to some adverse consequences for the liver though. Is there a way to test for liver health?

[mrsD]

Doctors can do liver tests... these are usually included in the chem panels that are given in once a year check ups.(CBCs, liver panel, renal panel, electrolytes)

B12 tests are ordered separately, as is Vit D, and most of the other tests on the check lists.

[mrsD]

Oh, BTW... if you use acid blocking drugs for heartburn, B12 cannot be absorbed from food properly.

And some people just develop low acid as they age..it is called achlorhydria.

Acid is necessary to activate intrinsic factor to latch onto the B12 as the acid breaks the protein peptides apart.

[IH8PN]

I emailed my neurologist yesterday stating that while we were waiting for the Nerve Conduction Study that I'd like to proceed with more lab testing. I stated that at this point I'm leaning towards an autoimmune or hereditary disorder and asked if there was any more tests he could order. Here was his response.

"At this time I do no not have any additional blood tests in mind. We have done some autoimmune testing including ANA and ESR tests.

I would like to wait for the nerve conduction test to get done first before proceeding with more blood tests. If it shows any particular pattern, it would help direct our attention to specific testing. As you have pointed it, the nerve test could come back normal, but we don't know for sure until we have the test.

As we have discussed, peripheral neuropathy can be a frustrating condition. Up to 25% of peripheral neuropathy are "idiopathic," meaning there is no clear cause despite exhaustive testing. So far we have tested for almost all of the "treatable" kinds of peripheral neuropathy."


Keep in mind here are the tests run so far:
B12>1000
D 25-Hydroxy 26
TSH = normal
Fasting Glucose 91
A1c 5.1
Rheumatoid factor = normal
ESR = normal
Negative for Lyme, HIV, Hep C

I guess I'm just not sure how to respond and I'd like advice on how t proceed. I'm 4 months in to PN symptoms and the pain in my feet is pretty brutal. I'm anxious and eager to get this under control or at least find out what is going on. Low dose Notriprtyline and Gabapentin have done little if anything for my pain so I'm not eager to just keep bumping those up. I'm ready to ask for a pain management doctor so I can at least be on my feet a few hours a day without being in excruciating pain. I'm only 33! I'm worried now I'll have to go out on my own and try expensive testing my insurance wont cover. On top of that I fear I'll lose my job and health insurance. It's alot to deal with on top of the pain.

Sorry if I've been so repetitive in my posts. I'm slowly watching my life fall apart and the pain has me feeling suicidal at times. If it wasn't for this board I'd truly feel hopeless at this point, but I'm trying to be strong. Thanks for listening and any advice.