Update!!!
 

Well I am glad I can make everyone laugh about the "boom-booms", LOL!!

Okay guys here's the update! I just read my medical records a few days ago and I saw a CT scan report that said I had mild interstitial disease at the base of my lung as well as a possibly mild enlarged thymus.

This really ticked me off because that scan was done over 2 years ago!!!

My cardiologist never told me about it at all since I guess she was only concerned if I had a pulmonary embolism. So she never had me follow up with my pulmonary doc nor did she order any additional scans.

The only reason I knew about the "shadow" was because the Mayo Clinic saw a glimpse of it. They told my regular doc and she ordered additional tests.

I am going to see a doctor today and have them order more tests to see how my thymus is doing as well as the possible progression of ILD.

I hope everyone is doing well today,

Stephanie

Stephanie, welcome to the "world of MG" -- where you have to educate yourself (medical terms, anatomy, lab reports, scans, etc.), take CARE of yourself, and serve as your OWN patient advocate (translation: sometimes act like a ranting, raving lunatic to get the ball rolling).

Sounds like you are MORE than capable of getting the job done. You GO GIRL!!!!

Steph, See my response to you in Dog Lover/Kendra's post, okay? Now the Keloids make sense.

Also, if you have trouble absorbing B12 through your digestive system, swallowing a tablet with B12 won't help. Unless you've actually had it tested, you can't say for sure what your B12 is up to!

I think you need better doctoring. Probably a new rheumatologist. Damn, I'd be so ticked off about the interstitial lung disease being missed. That'll cause your O2 sats to drop. Idiots. :ranting:

Hang in there.

Annie

Welcome!!
 

Hi Stephanie,

Sorry I'm late here but I wanted to say: welcome!!! This is a wonderful forum with lots of warm and knowledgeable people, you'll love it.

I went to the Mayo Clinic too. I had to begfor a week for an mg test and when it came back positive (twice) my regular mayo doc was too embarrassed or I guess arrogant and didn't say anything (jerk). The neurologist told me but said it didn't mean anything and that I didn't have mg (nice older gentleman but still, grrrrrrr - how could he not know that???). Anyway, good for you for diggning out your records. I've heard so many, many times that people have gone back and discovered results that their docs didn't tell anyone about. Unfortunately, you have good company.

I'm kind of confused about what tests they ran for you at Mayo but I do know if they did run mg antibody tests (although I think you were diagnosed later? Sorry, a little hazy) and if they came back positive than that would have automatically triggered several other tests one of which is the anti-striational test that Annie was referring too. If you think they might have done those then just call them up and have them send you the records. It's easier than having to dig them up. Ugh. I hate digging things up. :)

I'd see a neurologist soon to ask about that shadow. Didn't they look into your thymus when you were diagnosed? Well, they should have!! Aaaarrrrgh.

Good for you for asking questions.:Clever: Keep it up and you'll get to the bottom of all this. Hey, you're waaaaayyyy ahead of me, I'm going on 8 years of this. :p

Ally

Hi Ally,

No, unfortunately they never ran those tests. They did however find that enlarged thymus and ordered for my doc to have it monitored. I assume those results had came back after I was already on my way home, or they did not think it was important at the time.

The only reason I was referred to a neurologist is because my pulmonary doc was thinking, while I was in Minnesota and he was in a Colorado hospital due to a ski accident, that my hypoxemia may have been from a muscle problem. He told me that back when he was in school it was like a new idea that hadn't been proven yet. So he sent me off to the neuro, and behold he was right!

Who knew that a ski accident actually pays off, LOL!!

Steph

I have a brief comment.... B12 is absorbed orally if taken in megadose 1mg or 5mg on an empty stomach. This is passive absorption, (with no intrinisic factor). If you are intact with intrinsic factor more than the estimate of 10% is possible.

There is a new formulation of oral B12 coming that is about 50% absorbed.
Here is my B12 thread for those interested:
http://neurotalk.psychcentral.com/thread85103.html

The best form to use is methylcobalamin orally, since some people cannot activate and methylate cyano form properly.

so where the heck did MG come from?
 

Hi,

I may be missing something, but I went over your thread, and I am sorry but I did not come up with any symptoms of MG.

neuromuscular disease can cause hypoxemia, but it is usually relatively "late in the game" and not as severe as yours. (I mean someone with such a degree of hypoxemia due to neruomuscular disease alone would have to have a very high level of CO2 and near paralysis of their respiratory muscles).

don't know what school your pulmonologist was in, but in my school it was obvious that if someone was not breathing due to paralysis of their respiratory muscles it would lead to hypoxemia. what do you think was the reason for death from polio? and why did they develop those "iron lungs" which were the first mechanical respirators?

what you are describing could fit sarcoidosis (what they think is an enlarged thymus could be enlarged lymph nodes and it is not that trivial to tell), which is a treatable disease.

obviously, I do not have all the details and you seem to have been in the best places, but the way you desribe your management sounds very unreasonable (to say the least) to me.

I have a patient who was diagnosed with pulmonary embolism, and was treated for that for over a year. she was seen by the best experts, who coppied this diagnosis from the previous letter. when she came to me, I insisted on hearing the way she describes her symptoms (which she was quite reluctant to tell me initally because she said that I have it all written and she is tired of doctors that don't listen any how to what she has to say).

to cut a long story short, she never had a pulmonary embolism, and the reason for her respiratory problems was neuromuscular disease. and the clue was that one would expect a much more severe degree of hypoxemia in a massive pulmonary embolism, like she supposedly had.

the reason for this error was that there was a technical problem in the CT scan that she had, and it appeared as if there was a bilateral blockage of blood flow.

interestingly when I called those involved in her care and told them about this, they were all concerned that she might sue them. when in fact her husband said to me that he is really glad that she got this treatment needlessly, because thanks to that she came to me.

he was really glad that I encouraged her to go back to work, and stop feeling sorry for herself, instead of telling her that she is extremly ill.

he told me that they actually wanted to consult a more famous physician then me, but since their insurance would not cover that, they planned to come see me and then say that I couldn't help them and go to that expert instead.

why am I telling you this, because I myself was initially managed by the "best" but at some point I realized that I need to find a simple physician like me, who is not too busy writing papers on how he treats patients, and actually has time to take care of them.

and once I realized that and found a neuorlogist that is just a physician and not a world leading expert, my mangement improved significantly.
and also my current pulmonologist, who does not see himself as an expert in anything, was the first one to actually check and see my breathing, and not assume how it should be.

so, I think that you need to find a good internist, that still remembers what medicine really is, and have him go over your history, results of tests etc.
it could be sarcoidosis, it could be something else. but it would be a shame if it something that could be treated and was missed.

I am starting to think that an article I recently read in JAMA called- "common sense is not so common in medicine any more", is much more true then I thought it was.

and it is not just the neurologists that forget sometimes what the brain (their organ of interest) is meant for. (sorry for being a bit sarcastic).

alice

My Uncle died of sarcoidosis. Some doctors cannot identify it easily.

Alice, I love the sarcasm.

Mrs. D., Thanks. I had a severe B12 deficiency from a lack of stomach acid. I did not have the intrinsic factor or parietal cell antibodies. I took a multi-vitamin with B12 and ate food with B12 in it. Didn't help. Only the methylcobalamin did, one year after having B12 cyanocobalamin shots (yes, I know why that is!). ;)

Annie

Yes, I agree...sarcoidiosis is definite possiblilty...
Given Cherry's age..etc. This can be tested for.

It would be a shame not to follow up on that idea!

I am glad you are better Annie. Foods have very tiny microgram amounts of B12, can't rely on them, if one suspects one is low.

Best to get tested.

Hi Anne Md,

No I did not list the other symptoms because they are not as dominant as the respiratory fatigue and they rarely bother me, such as voice changes, my legs getting stuck when I walk, etc. I do every once in a while choke while I am eating, but I thought at the time I was eating to fast.

The reason it took so long to be discovered was because of a lack of these common symptoms. Lucky me, I had to have the only symptom that only 3% of MG patients have that does not involve a crisis.

Mestinon does help but it does not cure me during that 4 hour period.

I just wanted to see if there was anybody on the forum who has had the same problems, since everybody else (including my support group) has the more common symptoms unless they go into a crisis.

Thanks for the advice though.

Steph