Liza Jane's Checklist
 

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.

Most of those tests--
 

--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.)

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.

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.

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.

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?

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.

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.

Need Advice
 

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.

I feel your pain! This sucks! I took in Liza Jane's checklist and told my neurologist I wasn't going to be satisfied until every single thing was crossed out. So she went down the list and finished up what was left on the list and guess what, they said everything came back (you guessed it my most hated word) NORMAL! I am about your same age and feel as though my life is slipping through my hands and I want something done. I don't know how long I can live feeling like this, people shouldn't feel like this until your 80. I have had 230 blood and urine test. Brain MRI, full body CT, ultrasound of my abdomen, neck and heart, 3 chest x rays. I came to the realization that doctors are taught a certain thing and that’s what they go by. If it’s not simple or something they don't see every day than they just don't know. The best things you can do is to try and bring things to their attention to search for. Find a doctor that just doesn't have a clue but is willing to try. My family doctor didn't have a clue but would entertain directions I would go to and would allow me to be tested for it most time without even being seen by him. I am very humble by the fact that I found some hope for me and am waiting a surgery that will hopefully fix me. Until then I suffer (unless I starve myself and my neuropathy is lots better). Anyways what supplements are you taking? I got more help from supplements than anything. I started going down the list finding what supplements helped with what type of neuropathy and would try them to see if they helped. It was $$ but I didn't care (if you find some that you might want to try but don't want to buy I may have it that I bought and made things worse that I could pass along). I said I would eat dog poop if it made it better. Come to find out all I have to do is starve myself and the pain goes away. Also boosting your antioxidants (if you need some reading on it I can send you some links) and vitamin levels (I stay away from supplemented b6 even in breakfast cereals as it inflames my nerves) is a good start and won't hurt. I also tried changing my diet cutting out gluten and sugar. Both helped me, it was hard but not as sucky as feeling like I am being poked with needles all over. Also just remember, it can always get worse and there is someone out there that is dealing with this that is worse off than you. I didn't think it could until it started affecting my heart. It went from sucking to scary sucking.

Thanks Lewie, I talked with my neuro the other day. He doesn't seem aware of the full lists of tests. I told him I'd be ok with waiting for the nerve conduction study before preceding with further testing

I'm taking most of the common supplements. R-lipoic, Acetyl-Carnitine, Benfotaimine, Coq10, D3, B12, B complex. a few others I can't think of off the top of my head, along with gabapentin and nortryptiline.

I can't say I've improved, more like my symptoms are changing. Burning, aching, freezing, sensitive skin, broken toe feeling, stabbing. It all seems to vary day to day. Some are better than others.

Hope you get some relief. My feet are the worst. Can't walk or stand more than a few minutes which is really life changing. Hang in there!

I take all my B vitamins seperate than a b complex to avoid the B6. Something to think about. I also found I didn't get along with very much benfo, B5 and Acetyl-carnitine. All made my pain worse. My pain is different every day. Its a crap shoot to what its going to be like or feel like each day. I get relief from R-lipoic but it started making my heart go weird. I noticed your not taking magnesium. That is the number one thing that helps me. I take Mag64, the generic version of slomag. I HIGHLY recommend it. I was taking 4 a day but had to taper off to 3 cause it was also messing with my heart. If it didn't bother my heart I would eat 6 a day and would propably be pain free. Also I take all my pills at least 30 minutes to an hour apart to see how I feel after each one. That narrowed them down for me.

This can be tapered as well. Instead on one every day, mayhaps one every other day, skip every third day, etc. I haven't seen any capsules smaller than 100 mg, but I haven't seriously looked. Splitting/reducing capsules can be a messy PITA, but it's not impossible/undoable.

Shame those others didn't work out; did you try smaller/different dosing there as well?

Doc

I can empathize with your frustrations, pain and sorrow and everything else associated with IPN. It's an extremely frustrating process to say the least, the tests and even worse, the waiting! I am almost two years since the onset of my symptoms and I have been down the road of test after test, spread out months apart. In fact, most of the past two years I’ve spent waiting, mostly in bed as my symptoms worsen, many days in agony with prescribed meds that don't work for me. I go back and forth between not taking anything (other than supplements), to desperately needing these drugs that alter my ability to concentrate. I also get the broken toe symptom by the way.

I’ve switched neurologists three times out of frustration and desperation. All of the waiting and no expressed urgency by anyone to get down to discovering and treating my underlying cause. I read about neuropathy every single day, I try to educate myself to find my underlying cause, determine my triggers, good and bad. and maybe, hopefully, find my own "cure". By the way, I too suspected alcohol but my doctor says no. I don’t drink anyway as it is not good for nerves and mine need all the help they can get. I do have acid reflux and was on a high dose of Nexium for 10 years along with a vegan diet and I was not taking any vitamins which could be a more likely cause but again, not confirmed.

My testing: 3 neuro evals, 3 EMG's, 2 MRI's (brain w/ & w/o contrast), 2 MRI's (cervical spine), EEG, skin punch biopsy, lumbar puncture and gallons of blood work to rule this out, rule that out and arrive at my dx of...wait for it...IPN! I am no farther along than where I started (other than low Vitamin D). My doctor who is a private concierge MD that I hired to coordinate my care and help me to communicate with my neuro and get to the bottom of all of this appears glazed over when I tell him I'm not giving up searching for the cause. His response: "You need to come to terms with and accept that we will likely never know the cause of your IPN". And that’s where I am now.

This is all my experience so far. It doesn’t mean it will be yours. Keep doing your testing and ruling out and I hope your process goes better and faster than mine and that you determine your underlying cause. It’s also important to keep in mind that there is surprisingly very little they can do for PN. The treatment protocol is to manage symptoms, that's it. You do have to be your own advocate and find what works best for you. And what works for you may not work for someone else since we are all different and so is our PN.

That all said, I too am desperate for relief so I can live a somewhat normal life. There are drugs in the pipeline that could replace these off-label meds to better manage symptoms while our nerves regenerate on their own. One such drug is Clonidine gel. It is in Phase III trials with good results. Compounding pharmacies already make it and that’s on my short list (the cream I'm using now does not contain Clonidine). I think the pricing will be better too. For OTC, try Salonpas Deep Relieving Gel. It is just as good IMO.

Thanks for mentioning this. I just receieved some lyposomal R-lypoic and was mad cause it wasn't cheap. But I will try spacing it out. I tried the acetyl many different ways, every time it either did nothing or made things worse. I spaced out the benfo and the b5 and they didn't makethings worse but didn't seem to do anything. I still take them once or twice a week.

Titrating to find the correct dosage/balance can be a challenge and frustrating. I could never get ALC to work either, and I didn't seem to fit the profile for Benfotiamine. B5 has been tricky right along. With regard to PN, the study found it worked in conjunction with RLA; it never determined—or tested—whether it had any effect alone, so if RLA doesn't work for someone, I don't know if there's any reason to believe B5 will be of any benefit. OTOH, B5 has been shown to have potential/promise for a lot of things, so who knows? It might not address the burning pain (as is the purpose for taking it with RLA) but it may still provide some other benefit (e.g. lowering bad cholesterol & triglycerides) that may take longer to recognize. Dosage is another issue; fortunately, like B12, B5 has no known tolerable upper intake level, so there's ostensibly some wiggle room.

IMOE, B5 didn't work as fast as RLA (which worked for me almost immediately) but after a month or two—upon reviewing my pain journal—I noticed a definite difference. It also helps keep flares of cystic acne under control.

Doc