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A few questions for those of you who have MG

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Unread 01-29-2013, 08:49 PM   #11
AnnieB3
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Thanks, Robin. I have to tell you that 589 isn't great. Right, Mrs. D?

If B12 is not getting to your tissues, other things like homocysteine and methylmalonic acid (blood tests) can be elevated. If you can get your hands on some methylcobalamin sublingual tablets, that would be a very smart thing to do. You might not be getting enough from your diet! Studies have shown that even the meat we consume doesn't have enough B12. I get mine at www.iherb.com and have since 2000, a year after my B12 deficiency. I like the Jarrow Brand, 5 mg. I take it twice a day. It absorbs (under your tongue) itself into the blood stream and bypasses the GI tract. Some people can't absorb B12 well in the GI tract. The liver is where most B12 is stored and released.

Have you been tested for celiac disease? If not, please do! If you have it, antibodies attack your small intestines, decreasing the absorption of vitamins/minerals. The fact that you have a D deficiency and your B12 is not great is another indicator of an absorption issue.

If you can find a good internist instead of a GP, that's a good idea. No, you don't want to keep doctor hopping all over the place but you need someone who is adept at problem solving!

Pretty much any food can have organic arsenic. Recently, more studies have been done showing that rice products and some apple products have more than acceptable levels (see Consumer Reports on that). It's probably a very remote possibility! I think you should focus on possible autoimmune causes.

GERD and a lack of stomach acid can have similar symptoms. Only a gastroenterologist (a good one) can know the difference. A fairly benign "test" of low or no stomach acid is if you feel better having apple cider vinegar (yuck) with a meal. It acts as a mild acid. But talk to a doctor before trying anything, okay?

If you haven't started a log of symptoms, when they started, how often they happen, etc., it's a great way to organize your thoughts and it can be useful for an internist too.

Yeah, G-B is normally a more progressive disease that starts from the legs and moves upwards. My friend had it.

That's a lot to think about.
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Unread 01-29-2013, 11:29 PM   #12
keepingfaith
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Quote:
Originally Posted by AnnieB3 View Post
Thanks, Robin. I have to tell you that 589 isn't great. Right, Mrs. D?

If B12 is not getting to your tissues, other things like homocysteine and methylmalonic acid (blood tests) can be elevated. If you can get your hands on some methylcobalamin sublingual tablets, that would be a very smart thing to do. You might not be getting enough from your diet! Studies have shown that even the meat we consume doesn't have enough B12. I get mine at www.iherb.com and have since 2000, a year after my B12 deficiency. I like the Jarrow Brand, 5 mg. I take it twice a day. It absorbs (under your tongue) itself into the blood stream and bypasses the GI tract. Some people can't absorb B12 well in the GI tract. The liver is where most B12 is stored and released.

Have you been tested for celiac disease? If not, please do! If you have it, antibodies attack your small intestines, decreasing the absorption of vitamins/minerals. The fact that you have a D deficiency and your B12 is not great is another indicator of an absorption issue.

If you can find a good internist instead of a GP, that's a good idea. No, you don't want to keep doctor hopping all over the place but you need someone who is adept at problem solving!

Pretty much any food can have organic arsenic. Recently, more studies have been done showing that rice products and some apple products have more than acceptable levels (see Consumer Reports on that). It's probably a very remote possibility! I think you should focus on possible autoimmune causes.

GERD and a lack of stomach acid can have similar symptoms. Only a gastroenterologist (a good one) can know the difference. A fairly benign "test" of low or no stomach acid is if you feel better having apple cider vinegar (yuck) with a meal. It acts as a mild acid. But talk to a doctor before trying anything, okay?

If you haven't started a log of symptoms, when they started, how often they happen, etc., it's a great way to organize your thoughts and it can be useful for an internist too.

Yeah, G-B is normally a more progressive disease that starts from the legs and moves upwards. My friend had it.

That's a lot to think about.
Thank you so much. I really appreciate you taking the time to go through these things with me. mrsD recommend the B12 to me and I actually have it but haven't taken it. I have the Jarrow brand as well. I go back to my neurologist on 2/12 to review the results from my MRI. It seems to me that it doesn't sound to much like MG to you (maybe I'm just hoping). I will see if my regular doctor can test me for some kind of gluten intolerance although this doesn't run in my family (I don't know if that matters). In any case I will keep you updated and I really appreciate your responses. It gives me some direction.
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Unread 01-30-2013, 12:07 AM   #13
AnnieB3
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Robin, I'm sorry if I gave you the impression that I didn't think it was MG! Abby already covered that area, so I went on to figure out your other symptoms that didn't fit MG. Many of them really do fit.

MG is all about fatigable weakness. Do this, get weak. Rest, get better (relatively).

It just sounded like you had more going on that probably needs a doctor who is a critical thinker. Like many of us, we don't just have MG. I have celiac disease, have had a B12 deficiency (unrelated to CD and preceding it by 15 years) and a few other odd little things.

It's dangerous to miss a diagnosis like MG. It's equally dangerous to miss contributing factors like B12 and Vitamin D deficiencies. And those deficiencies are CAUSED by something! So finding the cause of the cause of your symptoms is important too.

For example, I had fatigue from a B12 deficiency. Great, glad that got figured out. But what my doctor should've asked - and I did - was WHY? I got my B12 deficiency because I don't have stomach acid. You need stomach acid to properly digest your food so that your small intestines can absorb the nutrients. So many things in the body are this kind of cascade of reactions.

Some people with MG also have some kind of thyroid disorder.

These guys are so good at outlining things that I often go off in other useful (hopefully) tangents. I'd hate for anyone to miss something while doctoring. It's happened too many times while I was.


Annie

BTW, You really can't get too much B12. It's not like B6, which can harm your nerves if you have too much. B12 harms you when you don't have enough! I've had it every single day since 1999.
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Unread 01-30-2013, 01:45 AM   #14
Anacrusis
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Hello

Glad you got lots of responses.
Am rushing off to work right now but about 6 of your symptoms were consistent with what my friend reported when she was diagnosed with celiac disease.....including the tingling, calf muscle symptoms, anaemia etc etc.
Her villi were completely flattened! Another friend shed a whole bunch of symptoms after being diagnosed and altering diet. At the same time she was able to cut out 3 medications she no longer needed soon after this ´small´change.....

Sounds like there´s more though. Good Luck! Don´t give up

Anacrusis
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Unread 01-30-2013, 04:37 AM   #15
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I'll answer the questions for you quickly, cause I don't have textbook MG.

Do any of you have nerve pain? Like neuropathy?
Not directly related to the MG (I do have it, due to other autoimmune disease)
When you talk about the rest being beneficial to the muscle pain/weakness does it completely take it away? Does it take several hours?
No, it never took it completely away. At my best, rest (which was at least 1 hour) made a significant difference. At my worst rest was just a way to get through the day. I never experienced the stuff I read in textbooks, like if you rest for a while it will disappear.

Do you feel well rested in the morning or are you weaker in the morning?
Strangly in the mornings. From the start it's like this: wake up weak, around lunch it's better, afternoon is the worst and evening is better.

Are doing things like grocery shopping manageable or out of the question?

For me, at the moment, it's not manageble. But it has been, though I had to use special car, a cane and/or my wheelchair.
But they say it will get better.

Anyway, I'm also a u young woman, and they are testing me for MS still. They think I may have it, besides the MG. My brain mri is "questionable" so it's a possible MS diagnosis. Maybe that's where my absurd fatigue is coming from?
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Unread 01-30-2013, 10:09 AM   #16
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Thank you everybody for your input and advice. Sounds like I still have a long road ahead of me. My GP is tired of me it's so obvious. I know that shouldn't matter to me but I get so upset even having to go see her because I know nothing will be resolved. She just makes me feel like a hypochondriac. I will work on getting to the bottom of this and let you all know what I find out. Best of luck to everyone!!! Thanks for all the responses!
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Unread 01-30-2013, 02:21 PM   #17
AnnieB3
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Robin, Good doctors never get sick of patients because it's their JOB and they chose to do it! I think one reason they start acting like patients are a hypochondriac is because if they can't figure something out easily and right away, it means they are a failure. Nope, it just means their creative problem solving skills aren't as good as they could be. But that might explain why they give up so easily and then need someone to blame for their inability to do their job well.

Hang in there.

Annie
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Unread 01-30-2013, 11:39 PM   #18
Tracy9
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You are describing all the symptoms of Chronic Lyme Disease to a T. Also of other tick borne diseases, Bartonella, Babesiosis....you really really need to get tested for those ASAP. Know that the tests are very inaccurate and you have to get the Western Blot, then go to Lyme Forums etc to get some help with it. All that neuropathy is very common as well as everything else you described. It is often misdiagnosed as MS or Guillian Barre. Lesions on the brain which are like the ones with MS are common (my son has three of them.)

www.lymefriends.org
www.ilads.org
www.whatislyme.com
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Unread 01-31-2013, 09:29 AM   #19
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Quote:
Originally Posted by Tracy9 View Post
You are describing all the symptoms of Chronic Lyme Disease to a T. Also of other tick borne diseases, Bartonella, Babesiosis....you really really need to get tested for those ASAP. Know that the tests are very inaccurate and you have to get the Western Blot, then go to Lyme Forums etc to get some help with it. All that neuropathy is very common as well as everything else you described. It is often misdiagnosed as MS or Guillian Barre. Lesions on the brain which are like the ones with MS are common (my son has three of them.)

www.lymefriends.org
www.ilads.org
www.whatislyme.com
Thanks. I have thought about Lyme also but the only time I know I was bite by a tick was when I was 3 years old and my mom removed it right away. How probable would it be that I would go my whole life so far without any symptoms? I also know that the testing is innacurate which is the main reason I haven't pursued that. I live in Chicago and I don't ever go in or around the woods or anything like that.
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Unread 02-01-2013, 12:16 AM   #20
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A TON of people who have Chronic Lyme and have a lot of issues from it are finding out they were bitten as children, have had it for years, and may have had unexplained symptoms related to it without knowing it. Also, a lot of people have it lay dormant for decades and then it is triggered by a pregnancy, car accident, surgery, or another bite and comes out full force.

Many times we have no idea we were even bitten. Testing is inaccurate, but there is a new test available at Advanced Labs that is more accurate. You can also at least get tested but make sure you get a Western Blot, and review the results yourself. One of the reasons it's so innaccurate is that they don't read them correctly.
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