Jenny,

We have some really knowledgeable people here, and I hope they will respond with some suggestions. Meanwhile, I have a piece of general advice, which you may already be doing: keep a journal! Write down what you ate and when, what activities you have been doing, how much sleep you got, what the temperature and weather is, whether anything emotional is going on, where you are in your cycle (if you have one), and everything else you can think of. I thought I had a good handle on my triggers until I tried journaling just for a couple of weeks, and I was amazed at the connections I'd missed.

Has anyone ever mentioned hyperkalemic or hypokalemic periodic paralysis to you? If not, it may be worth typing into google.

One thing I've noticed: when you read about MG, you don't really read about it coming in "episodes" like you describe, but I think for many of us it does. I have normal MG symptoms that gradually worsen as I get tired. But I also have short-lived (lasting less than an hour) episodes where I suddenly get very weak. I sometimes end up on the floor because my legs are simply too weak to hold me up. I don't crash down--it's more of a slow collapse. I don't black out, and my "episodes" aren't nearly as severe as the ones you describe. But I think of my MG as causing two problems: the general weakness, and these "spells." It's not that they're unrelated--the spells tend to happen when I'm especially weak--it's just that they are two separate things to deal with.

I hope you get some answers soon.

Abby

Jenny, Given your teen symptoms, didn't anyone think lupus? What about polymyositis? Do you still get rashes? If so, has anyone done a punch biopsy? If they tested you for lupus back then, has anyone done so since? Lupus is a multi-system disease, as I'm sure you know, and it can wreak havoc anywhere it wants to. Including the GI tract. Have you consulted with a gastroenterologist? Did they check for the cardiolipin antibodies? Given your heart issue, you might want to get that checked out right away. Do you have a rheumatologist you can see?

Silly Mayo doctors, what does the heart have to do with muscle weakness.

Are you weak on a daily basis? Do you have trouble doing simple tasks?

I hope you'll get your vitamin D checked. And B12 and folic acid.

Does your double vision go away if you close one eye? Binocular DV is what MGers have and it goes away with the closing of one eye. Monocular DV does not. Have you seen a neuro-ophthalmologist to try to determine why the DV? A regular ophthalmologist is not the way to go.

I volunteered my design/writing to the local lupus foundation for 10 years, so I know a lot about it. I can't help but think you could have that AND another AI. Yeah, you could have MG. Fluctuating muscle weakness is the hallmark of MG. But patients with polymyositis can look like an MGer too. My aunt had that. Have they done a CPK (creatine phosphokinase) test?

http://www.fpnotebook.com/cv/Lab/CrtnPhsphkns.htm

I'm sorry to say that it sounds like you need more doctoring. Always get a second opinion if someone "decides" you have a disease state. Mistakes do happen in medicine. I really hope you can get help with all of this. I'm sorry you've gone through so much.

Annie

I wish there were more physicians and patients who realized that...

Thanks for your wealth of ideas and knowledge, Annie.

Yes, they looked at lupus. I had positive ANA, high titers, speckled pattern, photosensitivity (eyes swelled shut in sun), malar rash in sun, joint pains, etc. etc. They treated me with prednisone, but felt that I didn't meet enough of the criteria for an official dx.

Since then, we've gone back and forth. I was diagnosed for a while, but then undiagnosed. Rheumatologists feel like I'm too healthy for treatment and frankly, I don't want to do prednisone.

I saw a rheumy at Mayo, but everyone was looking at me from the perspective of the heart/autonomic nervous system situation, so I'm not sure the right lens was used. Antibody test results came back after I returned home. I have positive SSB, but ANA (which has been positive and highly so for 20 years) came back negative. Rheumy recommended no further action at this time.

I don't have a local rheumy because the one I went to just kept saying he didn't know what was wrong aside from the fact that it is autoimmune. And, despite all the challenges, I normally maintain a pretty normal life, come across very functional, and just naturally adapt to many of the symptoms except when I get into a crisis period (like now). I stay in good shape and I am young, and I always look fine, so it's hard to get the help I need.

I haven't heard of polymositis, but will look into it. I don't get rashes often now and the biopsy they did way back when showed only hives.

Yes, a GI specialist was very involved during my period of GI bleeding. (I still have small ones from time to time.) But they had no explanation. I went through numerous colonoscopies, an endoscopy, exploratory abdominal surgery (after a test showed meckel's diverticulum - turns out there wasn't one), and a pill cam. Colonoscopy revealed large polyps, which were not associated with the bleeds and, in fact, the worst bleed occurred some time after they were removed. Endoscopy revealed hiatal hernia. surgery showed nothing, but caused a lot of complications and numerous hospitalizations - no more surgery for me. And pill cam showed nothing.

Yes, I am highly positive. That with my highly positive anti-beta II, glycoprotein I and episodes that were diagnosed as TIAs led to my diagnosis of antiphospholipid syndrome and life-long coumadin therapy.

In fairness to the Mayo doctors (who I think did a good job based on the information they had), I was accepted by them due to my heart/autonomic nervous system issues. During fainting spells, my bp was through the floor, so it made sense that these episodes were caused by these conditions. However, while I was waiting for the Mayo appointment, I had a pacemaker readjustment which I think really helped and then I had to stop my medication for the appointment. The medication keeps my heart rate lower, but this also lowers my bp. After being off the medication for a little while, my BP rebounded, so things had changed prior to testing. I would have thought that the improvement in BP would have been sufficient to stop the episodes, but since I've been home, I've continued to have problems. So Mayo really didn't have all the information. And neither did I.

I have good days and less good days. I get fatigued getting ready to go out and often become sick to my stomach when standing and doing my hair, for example. Showers exhaust me and I don't generally take hot showers. Mayo suggested I take showers only in the evening so as not to expend my morning energy too early. This might allow me to go back to commuting to work (which I'm scheduled to do next week - I've been telecommuting for the last six weeks). Sometimes I get so tired just sitting at my computer working that I have to lie down. But I generally don't sleep. My body just needs to rest, I guess.

Vitamin D has been consistently low, but I've been working on it and it just made it up into normal range. I'm not sure about the other two. will have to look into them.

Normally yes. I get it really bad when I lie on either of my sides (like when I'm reading in bed before I go to sleep). I always find myself closing one eye so I can read. One eye has perfect vision, the other has better than perfect vision. But I can close either eye and see more clearly than with both open. I don't have constant double vision. It comes and goes and tends to be worse in the evenings and when I am tired.

No. When I started having serious eye trouble at the beginning of this year, I thought I needed glasses, so I just went to an optometrist. They didn't find anything. Said I could get a prescription for the very lowest strength of reading glasses, but since the vision fluctuates so much, that doesn't make much sense to me.

I'm not sure. Will have to look through my 4 inch binder of medical records to see.

Thanks, Annie. I know I need more doctoring, but I feel at a loss as to which doctor to approach. My family dr. is basically a stop gap for the moment because my real (and awesome) doctor moved and I haven't found a good replacement yet. This guy seems willing to work with me a bit, but I don't trust him much. And he thinks my problem is high epstein-barr titers, which he wants to treat with IVIG possibly. I can't deny that they're high, but from what I read, it seems unlikely I currently have active disease. Nonetheless, I'm pursuing that, too, at the moment.

And if it's MG, or other auto-immune, IVIG might really help, so if it comes to that, I probably won't turn it down...

Anyway, thanks again for everything!

Jenny

Thanks! This is a great suggestion. I've been journaling in narrative format for years, just to get it off my chest, but I've set up a spreadsheet now where I track everything. Particularly since I went to Mayo. I want to have something that shows in a less subjective way what I am experiencing.

No one's ever mentioned it to me - we all thought these were just aborted syncopal episodes associated with my NCS and POTS. It wasn't until Mayo when tests seemed to indicate that they might not be that I started trying to work with drs to figure it out more. However, I've run across PP on the internet and subscribe to a list serve. It's another area where a lot fits, but a lot doesn't. I've never tested high or low for potassium and I am on a high salt diet for the POTS and that doesn't seem to make me worse. (Doesn't make me better either, but for PP, I would expect it to make me worse.) Testing for PP is tough too, so I'm trying to rule out the easier things first.

I call it a "controlled collapse." I wondered how it fits with MG. Is there normally warning for you before you have these spells?

Thanks again for your input!