Well the doctor I'm seeing right now did two different 24 hour urine tests. The endocrinologist tested for Addison's Disease (because my Mom has it) and several other things but I'm not sure what.
I had my records from one office at one time but wasn't thinking when I went to another office and let them keep the copy. I know I need to track down all of my records.
I am going out to dinner with my husband on Saturday at a new local restaurant, we have a babysitter coming to watch the kids for a little while.
I know that it doesn't sound like much. But I don't get to get away from the kids much and my hubby doesn't get much time away from work so we are going on a date.
I would love to go do more, something fun, but I just don't have the energy. I love scrap booking but I can't get the house work caught up enough to do it without feeling guilty about the house.
I just want to be one of those Moms that has the energy to drive her kids where she needs to and at least get to cook them meals and do fun things with them. But right now I can't and it drive me nuts.
All my friends live a long way away and are not on the same cell service as me so I can only call them on the weekends, then my husband's home and I don't get to spend much time with him so I spend that time with him.
Don't get me wrong I'm happy, I have two wonderful kids and a husband any woman dreams for. I'm very happy I just want to know what's wrong with me so that we can do something about it and I can hopefully get to where I can do a little more.
The not knowing is so stressful. I know stressing over it only makes things worse and I should think about something else. But how do you do that? How do you just go on with life and ignore this, when just getting up to fix a meal or do dishes makes you too weak to move, talk, or breath normally?
Okay I'm getting tired and can't think, thanks again for the suggestions, I will see what I can find about all those other tests. Thank you.
Kristie
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Originally Posted by AnnieB3
Kristie, I'm sorry you don't have answers yet. It can really be frustrating. But sometimes diseases are hard to find.
You mentioned in a previous post that you saw an endocrinologist. Do you mind my asking - what tests did they do? Did they do aldosterone and renin plus a 24-hour urine (sodium, aldosterone, renin, cortisol and osmolality)? Aldosteronism has been implicated as a mechanism in POTS and can cause periodic paralysis (which you also mentioned). Not all endocrinologists do that kind of thorough testing.
Do you know what enzyme was off? Was it creatine kinase (creatinine phosphokinase). If so, did they do any mitochondrial testing in your muscle biopsy?
You said you were on a lot of meds. Could any of those meds alter the results of the EMG's?
Sorry about all the questions but that's what I do. I have found in the past that if I don't dig a little deeper with doctors, I sometimes don't get answers. And since a record of a test was kept from me, I make sure I get copies of ALL my medical records. Sometimes doctors don't even tell you if a test was a "little" off and can dismiss it.
I should note that O2 stats in MG don't always "tank" until late in the game, in case you have MG.
Whatever is going on, I hope you can get some answers fairly soon. Just try to take good care of yourself in the meantime. Do something fun, to get your mind off of it all. I know, it's easier to say than to do. Music always helps me.
Annie
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