Hey all, I will be getting the answers to what this means from my neuromuscular neurologist later this week but I was wondering if any of you might have a little insight on this.

Because of where I live when I do a 24 hour urine test I have to bring it in to my primary dr and have them fax the results to my specialist. Well I recently found out that my last results were not faxed over, so I'm doing it. Anyway I was wondering if any of you have any idea what any of this might mean.

Myoglobin mine was 7 referance range is 0-5ng/mL
Magnesium mine was 4.4 referance range not established
Detection limit = 0.1

Lactic acid mine was 53 referance range 0-50mg/dL
Pyruvic acid mine was 25 referance range 0-15mg/dL
2-KETOGLUTARIC mine was 95 referance range 0-75mg/dL

on the first page of my muscle biopsy it says Labs, including CK, ammonia, resting lactate, pyruvic acid, aldolase, and AchR AB were within referance range.

They didn't have this urine test when they did the results of the biopsy but the urine test was done the day before the biopsy. Do you think this changes anything? I just want answers to this, I don't know if I can just wait another six months before any doctor even tries to look any further into what is wrong with me. I know I need my doctor to review these test and she will I was just hoping someone here might have some insight on this.

I hope that makes sense and thanks for reading, I hope everyone is having a good day.

Kristie

have no idea what on earth any of those things mean, but I'm sure someone will come along shrotly and be albe to explain it......I was just checking in.....how are you? Are you any stronger? Are you OK?

I have missed talking to you!

Big, big hugs!
Erin

I have done some research online and can find things that answer questions about one of the results by itself but can't find anything about all of the results together.

I'm okay. Not any stronger, just trying to get by. My poor house is so trashed. I get one day where I have just enough strenght to push myself to get a load or two of dishes and a little laundry done. Then I pay for it for the next three days.

How are you doing? How's the IV IG going? How are the guys?

Have a good day

Kristie

You poor thing! I don;t know why they give us these tests and then don't tell us WHY!!!!!!! What a joke!

I just finished my last round of IV IG until next month - 500 mL a day for 5 days........Hopefully it will kick in really soon!

Don't worry about your house....once you feel better, it will get better. Just worry about taking care of YOU! I know it's easy to say (esp since I have mild OCD and can't stand it when my house is messy) but it will get better!

I have missed you!!!!!!!

I really wish we lived closer..........that way I could DO more to help out......

Are you on any meds? MY neuro reduced my pred to 40 mgs a day - that's all well and good, but I want my ENERGY back! I miss being "normal"!!!!!!!!

I know you are tired, but would love to hear more from you whe you have the time/energy!!!!!

Erin

It's kinda funny, my dr probably told me what the tests were for, but her english isn't the best and I have a hard time understanding her. She's very sweet and understanding but hard to understand.

I'm on all kinds of meds for MS and POTS, just nothing for MG. Yeah normal would be great wouldn't it?

I will try and post more on here. I'm having horrible tingling lately all over my body and it's driving me nuts. It's prbably my MS but I'm not sure if I should call my neuro about it or not.

I need a nap and the kids are sleeping, I'll talk to ya later.

Kristie

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

Kristie, I hope Mrs D comes along to help with this one. If I remember correctly, she knows about the Krebs Cycle/metabolism and may be able to explain it better.

The tests they ran are organic acids and may (or may not) reflect some type of organic acid metabolism disorder. Now don't be getting all freaked out!!!! I am NOT an expert on this stuff. I only know about it from studying biochem. I wondered if I should even give you these two websites.

http://www.newtreatments.org/Basics/...test%20results

http://biochemgenetics.stanford.edu/organicacids.html

What you need is someone to explain if these results are significant or not. A regular neurologist may or may not be able to deal with this.

ALWAYS call your neuro with new symptoms. Tingling all over your body is definitely worth calling about!

I hope someone can give you some answers. It really sucks having to wait around for them. Just because the AChR antibodies were negative doesn't mean you don't have MG.

Wish I could help more.

Annie

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.

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.

I learned a long time ago (the hard way) that you can't freak out over test results until the specialist tells you it's worth freaking out about.

I had an MRI in 2005 and after playing phone tag for two weeks the dr left a message on my cell phone saying I had a glioma. I looked it up online, imagine my horror when I found out it is a brain tumor. My daughter was in bed sleeping about to be one year old and my husband was out doing vounteer police work. I was there by myself crying my eyes out so worried over this.

I found out later it was a white spot (glyosis) and was blown off that it wasn't causing my symptoms and all I needed was another MRI in a year. It took three years from that first MRI to finally get a diagnosis of MS but that still doesn't explain my weak spells.

I'm not going to panic over what these test results might mean, I just like to be able to research and see if I find anything with these test results that might fit my symptoms. I hate to be synical but I'm losing faith in most doctors ability to find out what's wrong with me. So I see what I can find on my own, I probably wont figure it out but I have more time to research than the doctors do.

It wont be a regular neurologist looking at these test results, it will be a neuromuscular neurologist. She's the one trying to figure out my weak spells.

My MS neuro is who I would call about the tingling, but if I called her at the first sign of every new symptom her phone would never stop ringing. I have to wait and see if it goes away within a day or if it continues. I will have to look in my symptom journal because I know the tingling has been here for a few days, just can't think of how many off the top of my head, but it has been getting progressivly worse.

I will be calling my MS neuro tomorrow. Hopefully she wont need to see me though, it's a two hour drive to see her and I can't do steroid treatment for MS flairs anymore because last time it triggered a 16 hour weak spell that was so severe I was having a hard time breathing and couldn't even respond to a sternum rub. So now my only options to shorten an MS flair are plasma pherisis or IVIG but there isn't much evidence that it helps enough with MS to be worth the time, money and inconvenience to go through it.

I haven't been tested for antibodies, doesn't make sense to me, but I haven't.

I also hadn't had a chest CT until last week, my primary doctor ordered one for me. I haven't got the results of that yet either.

I too hope that I get some answers soon, it is frustrating, 10 years from the start of my symptoms and still no answer but a few doctors say I'm just depressed, and several say it's something more, they just don't know what.

My primary dr likes to say "You're just a mystery wrapped in a conundrum packaged in enigma" He is a great doc and wants so bad for me to be able to get an answer.

Thank you for all your help and sorry that got so long.

Kristie