Originally Posted by bluesky (Post 491733)

Hi Kristie,

I saw that you replied to my message and I thought I'd try to answer what I could here. The specialist that Dr. Howard recommended is Dr. Richman at UC Davis. He actually has an office in Sacramento. Maybe you can drive down! I'm waiting on a referral from the mayo doc before I can get an appointment there. You'll need to have your Dr. call down a referral at 800/482-3284.

Dr. Richman co-wrote an article in a book on Myasthenia Gravis with Angela Vincent, the Oxford researcher who discovered the antibody tests for mg. I think that's a good sign. What I don't know is if he'll listen and that seems to be the most important thing. I'll definitely keep in touch and let you know how it goes for me, although it may be months before I can see him, I don't know.

The AchR test is for myasthenia gravis, although it's a blood test so I'm not sure that that's what the AchR is referring to on your post. Make sure they test you for three AchR antibodies: binding, blocking and modulating. They also need to test you for the MusK antibodies. Here's a funny thing for what it's worth: I tested negative, and I mean a big fat zero, on the binding AchR test here in Portland. I went to the Mayo and tested positive on it twice. I wasn't expecting that. I was hoping they'd be able to find mg with a single fiber EMG there. Well, I searched and searched and finally found an article by the lab that the Portland doc sent my test to - ARUP lab. From what I've read, they use different muscles fibers. Now, I'm a mathematician so I could understand the statistical mumbo jumbo, but the last time I had biology I was in 11th grade (a looong time ago, trust me), so take this with a grain of salt. But what I'm saying is that I believe that it's a somewhat different test but they use it interchangeably. If you think it's important, you can have the mayo labs send out a kit to your doctor for all these antibody tests and have the mayo clinic run them. I can send you the link if you like. I know it is doable because I did exactly that for my son.

The pyruvate and the lactic acid is an indication of the krebs cycle which is part of the "energy machine" in the mitochondria of every cell. It could indicate a mitochondrial disease or a metabolic disease. Again, don't take my word as gospel, but I looked into it to as my pyruvate and lactate serum levels were high. Sorry, but nothing else in your labs rings a bell. Make sure that whoever eventually explains it to you really explains it so you understand. Don't let them make you feel like you're wasting their time.

Hoo boy, I totally understand getting overwhelmed with the house. Boy, do I. It's so overwhelming, isn't it? I often feel like I just will never win. I too have one good day followed by several awful days. I try to lower my expectations, but it's really, really hard. Try not to get discouraged! Someday we'll get help. We just have to keep trying and not give up.

Ally

Originally Posted by ras1256 (Post 491820)

Hi Kristie -
The good news is that your doc is really looking at everything to help you! I am at a loss as to what all this means, though.

Do you have a good enough relationship with your doc that you can call in and ask for more explanation on those results? I would think they will at least be able to tell you what, if anything, your various levels may indicate, or what they are looking for with these tests specifically. That way you wouldn't have to wait almost a week. I think sometimes the docs get a little desensitized to how much the waiting can stress us.

I've never asked you if you go onto the MS forum here. If not, you may want to check them out - you can get some feedback on symptoms and if others experience them or not.

Hang in there, girl! How's the planning for the anniversary party gone? Are you sure you're not taking on too much right now (more of that "mommy talk", huh!)

Kiss the babies and hug the hubby for me. Tell him I think he's a wonderful person, which YOU DESERVE. I know it's really hard on them too, physically and emotionally, but as my husband just reminded me on Friday (our 33rd anniversary :) ) he promised "in sickness and in health", and remember what I told you. It's harder on my husband if I do too much and he has to watch me suffer. You have to take care of you to be able to help them. (Nag, Nag, Nag).

Love ya.

Originally Posted by mrsD (Post 491815)

This link explains magnesium wasting:
It is hard to say what your results mean, since this
test site is Australian..and they use different numbers there.

http://www.australianprescriber.com/...ne/30/4/102/5/

I don't know much about the specialized testing, but it appears to me that your urine tests are screening for mitochondrial
issues. (Mito issues are connected to muscle function).

There is a genetic disorder called ketoglutaric dehydrogenase deficiency...but that is usually found in children.

Your out of range #s are not high. There is some error involved with urine samples, so don't worry yet. They may redo it or order other tests or not. That is up to the doctor.

Sorry I can't help you more.