That does sound confusing. Which lab tests are we talking about???

Non-neuro Docs are still wondering if my immunoglobulins are part of a causal factor for IIH. So the test I'm talking about is Kappa/Lambda Free Light Chain Assays with Ratio. The Quest version was done with FreeLite, which I understand to be the only FDA approved assay for this. BUT, I was reading about a newer (2012) lab that's being marketed, altho the reference ranges don't match my original baseline labs and I don't see any FDA approval.

The problem is that my numbers are dropping like a stone, just at the bottom range of normal. It would be so very helpful to have an apples-to-apples to make sure I know where I really am and how quickly numbers are dropping. The particularly important value is the Ratio.

RANT: Why, why, why is there little standardization with this stuff?!?!

How's your day going? :)

Oh how frustrating! I wish I had a ready answer for that. It's hard when they get into the "fancy" labs. That is interesting about the possible link between immunoglobulins and IIH. It seems that immunology is still in it's infancy, it's so complex! Have you seen an immunologist? I saw one a few times but as I understand it he's a bit of a rarity - the nurses there said there aren't very many "pure" immunologists out there?! Most of them are more of allergists. This guy was excellent at ordering labs I had never heard of. However, the couple of lab results I tested positive in - the significance was pretty open to interpretation medically, as there is not always enough known about the newer/"fancy" labs. Ugh. Well, glad to hear you have some sort of a lead.

Not sure if my brain is sharp enough for this type of thinking yet this morning - but could you just move the decimal point to convert deciliters to liters? Would that work? Oh never mind - you mention that. Would it cost an arm and a leg to repeat the test using the original type of assay kit, just to see how it compares?

My day - so far just fine! How about yours?

I have seen a true immunologist - wasn't terribly successful and his recommendations were so off the mark, I haven't gone back. That and the fact that it takes 4-5 months to get into see him. I've followed up with haematologists, who've been monitoring my immuno's for past 1-1/2 years. It's a pickle, but no one's really sure about what, if any, the relationship is. More of an acknowledgement that the odds of having 2 such rare conditions are inestimable and that they "think" there's got to be a link somewhere. I'm still reading and reading and it's such a mystery.

The issue with repeating the tests isn't a cost-issue, it's a timing issue. The Baseline was set back in August 2012, then there were series upon series of different assays done at different facilities - ergo the conflicting reference ranges. I could start a new baseline as of now with the most recent Quest Labs testing -- at least it would be something. Just so very frustrating that I can't get my hands on some sort of conversion calculation to translate one to the other. It's also a pain in the tookus for other docs.

My day okay so far -- am off to a medical appt. soon, so have to drag myself into shower, etc. We have sun today, which is a joy after many, many days of rain and storms.

Thanks for help; really appreciate it.

I'm not sure if this would help at all, but it might be worth a try...one of the members from awhile back found the site labtestonline.com or .org - it allowed you to put in your lab results and then you could ask questions about it. Like I said, I'm not sure if it will work, I've gotten some info from them - but probably not as extensive as you are looking at. Hopefully it helps

Kristena

Thanks Kristena - I LOVE LabTestsOnline. I emailed them about the mystery reference ranges, but haven't heard back yet. Thanks for suggesting.

Pressurecooker,

What does your doc say about the possible connection between Immunodeficiency and IIH?

And with that specific test - Kappa/Lambda Free Light Chain Assays with Ratio - do you have multiple myeloma? Myeloma is one cause of immunodeficiency out of many. Why do they think you have multiple myeloma, or was the test just to determine if you do? I'll pray for you it is some other easier to treat cause. Big hug reaching right out for you.

Tests found I am deficient in IgA. Since it's made me so sick (constant sinus infections, I catch every cold & flu in sight) there may be IgG subclass deficiencies or other selective deficiencies as well. I'm waiting for more testing.

How could immune deficiencies cause IH? I suspect there may be a link but I don't know what it is. It might be chronic repeated meningitis, but I've only had one LP come out with high protein and he didn't order a culture on that one. Is there another way an immunodeficiency could cause IH?

P.S. I assume you had your IgA, IgG, IgM, etc. levels checked. How did they come out?

Sorry I keep posting. Pressurecooker, if you have CVID the odds are 1:50,000. If you have just IgA deficiency the odds are much greater - 1:333 (which makes it common).

But still... what are the odds of someone having both IH and an immunodeficiency, even the rather common one? The answer is 6.0E-8.
0.00000006.
1 in 16,666,667.
One in 16 million
That means if it's a coincidence, it's a heck of a one.

And the odds of TWO people having both IH and an immunodeficiency (@1:333)? 3.60000e-15.
That means:
.0000000000000036
That means:
1 in 277,777,777,777,777.8
That's 1 in 277 TRILLION. What?!

Fellow math nerds - Please check my work! Is that right? Run it through the calculators. Maybe the calculators are wrong.

Probability of 2 events:
http://www.calculator.net/probability-calculator.html?cal1pa=0.003&cal1pb=0.00002&calctype=twoe&x=54&y=9

Probability of 4 events:
http://www.calctool.org/CALC/math/probability/4_events


And if everybody had their IgA, IgG, IgM tested, how many more of us would have abnormal findings?

I know you are talking immunology but does anyone out there have elevated platelets? or a vitamin D deficiency? Living in the north made my vitamin D go into the toilet in the last year.....uh :( just wondering. I know a neuro NP that told me I need to get to an NO right away (she thinks there is more to this with the elevated platelets) and she knows one in GR (MI) so if things don't go well tomorrow with my neuro that is who I am calling next.
I wish you well on the hunt of IgG, IgA and IgM.....if I remember correctly one of these was elevated years ago and I found out through an allergist. Which makes sense to me since I have a lot of food allergies.
Check this out: http://jcm.asm.org/content/24/4/536.full.pdf
interesting reading about a link to neurology and the immune system

and how scary is this....same symptoms that we have.....and it can occur in the US. Make me not want to eat pork.....at all. Which I already stopped eating beef....not so hard to give up now

Aimhigh - I have had low Vit D and take a supplement, my platelets though are within the normal range. I believe it's 85% of us who have low Vit D in these part so I have a hard time giving it much weight in regards to IIH. I vaguely recall others posting about their elevated platelets, perhaps they will have some insight in regards to this. It's good your doctor sounds to be on top of it!

As a long term vegetarian - good call on some of the meats! :) The article looks interesting, I will have to come back to it later in the day (too "smart" of reading for first thing in the morning, ha).

Sea: Sorry, I dropped out for a bit - darned headaches have been wiping me out. So, no doc has ever said anything specific connect-the-dots about relationship between IIH & low Igs. Just that it's too rare a coincidence to have both elevated pressure + pressure symptoms AND Hypogammaglobulenemia. You've run the math better than I ever could. One doc said that it might have to do with the lymphatic system, but that was as far as he got. I thought, "well, lymphatics help clear CSF & if IIH is an absorption problem or a flow problem, then..." I've asked if it's CVID and I get yes&no answers since I do catch colds often, but don't manifest the really bad respiratory conditions that are typical of CVID. So, I'm DX'd Hypogammaglobulenemia but kind of asymptomatic without any proof that it's tied to IIH.

I don't have myeloma that we know of, and no one thinks it's a case of smouldering myeloma. But, thanks for the hugs.

The light chain assays were run to make sure that the Ratio was still within limits. It is just barely, but dropping. That's a concern as the Ratio is an indicator of out-of-whack -- and I've always been told to keep an eye on my albumin/globulin ratio with respect to Igs, too. This I can't figure out because I always thought that A/G ratio was a liver thing, but immunologist kept pointing it out (mine's elevated).

I've figured the best way to try to make apples-to-apples of all the different assays is to look at percentages of the range - about the best I could think of (unless someone else here suggested it and I owe them a hat tip).

Am glad you're having more testing done to see if there is a subclass deficiency(ies) notable. My understanding is that's where the rubber meets the road. Selective IgA is a bear, but doesn't necessarily respond to IVg transfusions, am I right?

Yes, I've had all but my IgE run. IgA =

AimHigh: I have elevated platelet count on again/off again - go figure. But, I always have a low MPV. No Vitamin D problems as we live in sunny land year-round.

Thanks for link & good luck with your neuro tomorrow.

Hey Pressure Cooker - I get lost on the immune lab bits - its not an area i have researched yet and they are certainly not tests the NHS are handing out to any Tom, Dick or Harry, so its all gibberish to me at the moment. ;) But what was that you were saying about the lymphatic system?
The standard view of IIH is that the body produces too much CSF - however alternative theories are that up to 50% of CSF may be drained via the lymphatic system and venous drainage, therefore the issues with over pressure may be due to more then just overproduction - add into this edema reducing cerebral space and thereby increasing pressure and production may not be an issue at all - in fact reducing production may be the barest of stop gaps when drainage and edema are the influencing factors.

These theories are very fringe and i dont know your immune systems theories well enough to know if there are any relevance there but it sounded like from your one comment you were starting to touch on these?

This link looks at the lymphatic drainage
http://www.csf-regulation-research.org.ohio-state.edu/havener/publications/pub6.pdf

This one is IIH and looks at an integrated picture of edema and impaired drainage, venous ad production
https://drive.google.com/file/d/0B1tnUf7D0Kttb2NaMkI3eUNpaEE/edit?usp=sharing