Well I saw the doc today and they did have my biopsy results. Everything they tested for came back normal. But there were some enzymes they didn't test for so she is going to have them run those tests now.

She also wants me to go for a pulmonary function test. So I have to call and try to get that schedualed so I can have it done and just keep my appointment on the 17th.

If the rest of these tests come back normal she said we will have to take a wait and see aproach because she really doesn't know where to go from here.

Why do I get so close to an answer, a doctor tells me what they think it is, I look it up and think it fits, but then the tests say no that's not it?

I'm so tired of this! I just want to scream right now.

Okay sorry that was a little vent there, I'm really okay I will just keep on living life like I have been and hope for the best.

I hope you all are well today.

Kristie

Oh Kristie! I don't even know what to say..........You have been through so much already. I can't even imagine your frustration right now.

Scream!Cry! Do whatever you have to! You have earned that right!

I'm gonna ask everyone I know to pray for you. There is an answer. They just haven't found it yet!

Again - I am so sorry!

Erin

Thank you, you're so sweet.

At least this doctor isn't saying, well the tests don't show anything so it's all in your head. She still believes there is something physically wrong, she just doesn't know what.

Thank you so much Erin, you have been so helpful in the last month or so.

I just don't get it though, MG really seemed to fit for an answer. I know it's hard to diagnose but is there any chance all of their tests would be normal an I still have it? Not that I want to have MG, I want an answer.

Ugh I feel like I should just be in bed today. I wish there was someone who could take my kids for a few hours so I could rest. But that's not gonna happen so I will just have to put on a movie and hope they rest with me.

How's the IV IG going, still feeling great? I hope so.

Have a good day.

Kristie

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

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

Kristie,

Sometimes life just sucks! I am so sorry for you - I went through that up and down with doctors and tests for a long time, then got the dx that is now being questioned AGAIN! Neuro stuff is so wierd, and again, most conditions are diagnosed through an accumulation of tests/exams - not one single test (like with cancer).

From what I saw of POTS, it can cause the weakness, breathing energy problems, right? They don't feel that's it?

Sorry, I know you're tired of dealing with it, but I looked it up after you mentioned it to see what I could learn for you - probably nothing you haven't done.

Vent whenever you like - that's part of what we're here for, honey!

Love to you!

My tests are largely normal too - but I am sicker than a dog - I am having swallowing issues, weakness, etc. and I had the MG diagnosis and now they say I am not (so I lurk here...).
My biopsy came back with all sorts of stuff on it - rare atrophic cells, cox mitochondiral cells etc - and they tell me it is NORMAL!
I fail (or rather, am normal) for EMGs, but have an abnormal SFEMG. But I am twitching (I have a muscle under my eye that has been going for 3 days and sometimes my hand and other things go) and I have no power, no stamina - but the docs just look at the EMG and pronounce me a-ok.
I also have had a bunch of endocrine issues - Cushing's was my biggies so they keep saying steroid myopthy is my issue but now for 3 years my steroids are at normal levels. Besides, how can they say steroids causes my weakness and pain and OH YEAH, you want to treat me with more steroids??? The ones the beat me up I produced myself, so no way I want to take more.
Hang in there.