[ermintrude]

Hey, guys,
So, my neuropathy has been getting worse in recent months and my doctor decided to start looking for autoimmune causes for the progression. For a little background: I have pernicious anemia (which did NOT cause the original damage, fun fun fun), asthma, psoriasis, and allergies, and I get serious flareups after I get sick. All of my autoimmune tests have been normal, except for the fact that I apparently have low-serum IGA deficiency. My doctor (Weiner at Columbia) says this can cause autoimmune stuff, but besides this test my autoimmune panels have been sparkling! So he thinks it may all still be a coincidence, but at this point I don't see how. Does anyone have a similar case? My docs kinda rely on me to come to them with ideas at this point and if I don't bring things up nobody will.

[mrsD]

Here is a good explanation that is understandable about Low IgA:

http://neurotalk.psychcentral.com/post578126-3.html
and more discussion on the full thread there:
http://neurotalk.psychcentral.com/sh...126#post578126

People with Celiac or the less severe gluten intolerance are often low in B12 due to malabsorption issues from an inflamed GI tract.

I think you should get B12 tested, to see if your treatment for the pernicious anemia is working properly. Typically doctors give everyone the same dose, and that is not always wise or effective.
Using Cyano form also is a problem if your body does not activate it to methylcobalamin so it can actually work.
Don't use any injection or supplement for 7 days prior to the test to avoid false high readings.

So you need to explore that B12 chemistry some, to see if tweaking it will improve things for you.

You should be at least at 400pg/ml. That is the new low normal.
If you have neuro symptoms you should be higher, closer to 1000. Doctors still today remain clueless on B12 treatments. And lab ranges still go down to 200 or less as "normal".

You can do oral methyl B12 yourself for pennies a day, and cut to the chase better than injections. You only need to take the methyl form on an empty stomach.

[ermintrude]

Thank you! I've been having the "not enough B12" discussion with my doc for months. It's gotten so bad that I've been sent to the ER two times on suspicion of head injury when all I actually needed was my shot. My aunt had a similar bout of PA where they just could not get her feeling better. Unfortunately, I have intrinsic factor antibody PA, so no cheap oral supplements for me :| I'll take another look at my recent levels check to see how it was. My doctor said it was "good enough for her," which in retrospect was not the correct answer to "what were my levels?"

[daniella]

Hi I also have unexplained PN and have had basically every test in the book and seen so many specialists. I also have to deal with doctors guessing what may or may not be going on. I have found for myself many specialists don't make connections between symptoms that are going on. They don't like to look outside of their speciality. I am not saying this is all docs but some. What type of specialist are you seeing? Have you went for another opinion?
Though it may not cure you have you tried to make changes to your diet? Even if a person is not allergic some foods can cause a flare more then others. I am wondering if it would help some of your symptoms such as psorasis
My doctors too have also said so many things are a fluke of problems that have happened along with the severe limb pain from my RSD and PN but at 28 when I developed this I dont think so. Like you I developed severe skin problems,eye,ear problems etc. I dont buy it that it is a fluke.
Unfortunatly at the moment since I am diagnosticly tested out the course I have had to take is about pain control which is hard of course when something more underlying could have been a cause. Have you worked with a pain doctor? Many don't just deal with meds but other treatments such as diet,exercise,different forms of mind and body therapy.
Hope you get some answers and feel better

[Wide-O]

Originally Posted by ermintrude

Unfortunately, I have intrinsic factor antibody PA, so no cheap oral supplements for me

It was my understanding - but I could be wrong - that methylcobalamin does not require intrinsic factor to be absorbed. Have you looked into that form of B12?

[ermintrude]

Originally Posted by Wide-O

It was my understanding - but I could be wrong - that methylcobalamin does not require intrinsic factor to be absorbed. Have you looked into that form of B12?

Alas, all forms of B12 require intrinsic factor to be absorbed through the stomach. Cyanocobalamin and methylcobalamin are both absorbed in the blood, but cyanocobalamin has to be converted by the body into methylcobalamin.

Boy, I sure am glad I wasn't using my dictation software for that sentence.

[Wide-O]

Originally Posted by ermintrude

Boy, I sure am glad I wasn't using my dictation software for that sentence.

I bet it would have come out really funky!

OK, it's just that some tests have been done on people with pernicious anemia lacking intrinsic factor, and it seems there is something called "passive absorbtion". More here and here.

I would normally not push this, it's just that I have done both injections and oral methylcobalamin. While the injections worked (it was hydroxocobalamin BTW, not cyanocobalamin), I was always dependent on "others" to get the shot. A friend who had pernicious anemia could set her own - as she is a registered nurse - and she could feel exactly when she needed one, which doesn't always follow some tight schedule. I guess you felt exactly the same.

I was highly skeptical of oral, especially as I had messed up my stomach with antacids and alcohol for years, but to my surprise, taking 5000mcg on an empty stomach every morning, it worked perfectly, safely, and cheaply(!).

After falling back to the 300 range within 2 months after my last shot, I managed to go up to 1296 in 3 months with just the oral methylcobalamin.

Worth a shot? (pun not intended )

[mrsD]

There are studies showing passive absorption takes place in
the intestines, for PA patients without intrinsic factor.

Here is the link of a table used to measure blood levels:

http://www.ncbi.nlm.nih.gov/pmc/arti...able/T1/#TF1-4

The column to the right of the table, shows PA levels.
at 1000 mcg oral the absorption is almost the same as for non-PA patients.

Methycobalamin is the preferred type to use, since some people cannot convert cyano form (which is inactive and synthetic).

Using oral forms of B12 requires no food be present. If food is present absorption will be hindered and much lower. So empty stomach and nothing for an hour after, is best.

There are some medical sites now, that encourage doctors to use
oral treatments now. These of course are best done every day...and now can cost just pennies a dose. The one we use now from Costco cost us 6 cents a dose.

[ermintrude]

Originally Posted by mrsD

Using oral forms of B12 requires no food be present. If food is present absorption will be hindered and much lower. So empty stomach and nothing for an hour after, is best.

There are some medical sites now, that encourage doctors to use
oral treatments now. These of course are best done every day...and now can cost just pennies a dose. The one we use now from Costco cost us 6 cents a dose.

I will try this! Very exciting.