Yeah, I wouldn't be happy with a nondescript diagnosis either!

Have you been tested for celiac disease? Since your B12 and D were low, that's a possibility. Are you on any antacids? That can reduce B12, iron, albumin, and calcium.

How much magnesium are you taking? Usually, people can get what they need from foods (i.e., nuts). It can be bad for MG if taken in too high of a dose.

Are you taking methylcobalamin? Many people have a MTHFR mutation and cannot convert cyanocobalamin into methylcobalamin. I hope you'll take a separate supplement for that.

Are you taking D3?

I'm asking pretty obvious questions, but I don't want to assume anything.

Lupus is a funny disease. It can creep up slowly. And it comes in "flares." Pain and fatigue can be the first symptoms. I still think that a second opinion from a good rheumy is a smart thing to do. At least rule it out.

I think some doctors are allergic to thinking. I hope you can find a couple of them who aren't!

Annie

I have not been tested for celiac's. Wouldn't stomach issues be a first sign of that? I would say I eat a pretty large amount of gluten. It would probably be helpful to know that I am a vegetarian and have been for well over 10 years but have never had symptoms like this before.

I am taking 650mg magnesium I believe. I am taking cyanocobalamin 500 mcg a day, but recently read I should probably take more as absorbtion rates can be a lot lower. The vitamin D is D3. I'm not on any antacids.

I am a little worried about Lupus. Doesn't that usually present in joint pain and swelling though? My joints appear fine and my pain and weakness seems to stem more from the muscle.

You might not have lupus, but with a speckled titer such as that, it's useful to rule it out. And a rheumy can rule out any other issues such as polymyositis, Sjogrens, etc. Their realm is inflammation and I really like their unique perspective. They might be able to determine why that titer is high and speckled! Wouldn't you want to know?

Lupus varies greatly from person to person. Don't be afraid of something you don't know you have! I just thought it would be useful to see another type of specialist for an evaluation. Neuros only do so much.

The liver converts cyanocobalamin B12 into methylcobalamin B12 so that the body can use it. So it's best to use the methyl, if you can. I like the Jarrow Formula brand. I had a severe B12 deficiency years ago and take the 5 mg. daily (I take it twice a day).

650 mg of magnesium is fairly high, especially if you have MG. Since you're a vegan, it should be easy to get that from foods.

Stomach issues are not always present with celiac. In fact, you can have no obvious symptoms and still have it, which is not at all useful! Most people do, though. Gluten sensitivity is just as damaging and harder to figure out. An internist can test for the antibodies.

Some diseases mimic others, so it can take a while to figure out what's going on. I personally like having a second set of eyes and ears (and brain) on something.

Annie

I'll be seeing an internist on Monday, so hopefully more tests can be run.

What symptoms did you have with your b12 deficiency?

I had been really tired since about 1997 (probably earlier). Then I was so tired that I felt sick. I had numbness/tingling (paresthesias) in my hands, feet, and face, low back pain, off and on severe headaches, palpitations, feeling of being faint, increasingly lower white blood cell count, and more odd little symptoms.

The fatigue was so bad that I felt as though I was dying in the last several months. I had to finally beg my doctor to run the test in 1999.

My homocysteine was elevated. Methylmalonic acid can also be elevated with a deficiency. People can be "deficient," meaning that not enough B12 is getting to their tissues, and still have a normal B12 level. Mine was below normal.

The cause of my B12 deficiency was a lack of stomach acid. I was also having reactive hypoglycemia due to that.

A good doctor will ask for all of your symptoms and really listen. Writing them down will help a lot, since it takes less time to look at a list of them than to hear them.

One thing your internist could run is a CPK (creatine phosphokinase).

Are you at all short of breath? Or do you only have muscle issues?

Good luck with the appt.!

Annie

I had a normal CPK test about a week or two in to my symptoms.

My breathing seems to be mostly normal. I am stuffed up currently but am still able to get deep breaths.

Annie,

My neurologist's office just called and told me my bloodwork came back with elevated levels of b6: b6 when the recommended max is 30. Do you have any insight on this? I read some anecdotal accounts where people with high b6 had the same symptoms.

Have you been taking B6 supplements? Overdosing B6 without adding supplements is rare.

I had been taking a b complex. I also drink red bull which has significant b6.

Then I think that you have, at least part, of your answer. STOP the red bull, it also has heaps of caffeine. Stop the b complex. Take B12, drink water and give yourself some time to detox, then see how you are.