My non typical symptoms. I think GERD was my first. In fact, I had an upper GI well before my diagnosis because of swallowing problems and reflux issues. Another symptom for me, I get shaky. Like you, I feel like I have to lock my legs when I am standing up sometimes as the day progresses because my knees don't have strength. My last symptom which the docs say is not related, distorted moving vision/balance issues. I've been having problems since April (oscillopsia) but without any evidence of nystagmus. That's for another day though.

I am with you on locking your legs!! I do this all the time as I feel like my legs are going to give out!! If I am really bad I struggle to lock my knees, like you said - it's like they don't have the strength.

I also have the room spinning if I sweep my eyes across a room etc, sometime just reading a line will cause a momentary head spin!

I'm with both of you on the leg-locking! Toward the end of the day, my knees (the right in particular) will sort of pop out from under me, and I fall on a regular basis. I've developed a leg-locking walk to cope with it. My neuro finds it weird, but for me, it seems like a clear result of the weakness.

I also have a tendency to stop breathing as I fall asleep. A sleep specialist has determined that it's not apnea, as there's nothing that's closing off the airway. I simply quit breathing! Needless to say, I wake up gasping for air a lot, and that keeps me from getting good, restful sleep. It's one of the scarier symptoms for me, and I feel it's related to the respiratory weakness that is my primary manifestation of MG. Mestinon has helped, but not entirely.

Raynaud's often accompanies autoimmune diseases. Blue hands, feet lips, etc.

I get the air thing to every once in a while. Its like my brain isnt telling me to breath but im not doing it in time.. Its like im holding my breathe but of course this never happened during my sleep study.

Poor coordination of eyes can make for light headed too.

I do have Raynauds and Gerd but have thought of them as separate problems and also Hashimoto's but I have thought of the Hashimoto's and Raynaud's as being linked as they are both autoimmune.

The thing I have thought related is incontinence since some of the muscles involved are under autonomic control (think Kagel exercises here among other things). I realize some od the literature states it is involuntary but the reality seems to be that some of it actuslly is voluntary. I am going to try an experiment on the 30th and have a temporary wire implanted near the sacral nerve. I will keep a diary the week before and the week after to see if this stimulation works. If it does then I will have an Interstim implant done. Wish me luck on this as I am hopeful! Marie

I am so with you guys on the locking knees thing, except that I feel like my knee locking kind of pops in and out of position because they are too weak to stay in either position for very long. This is particularly after a bad day or if I'm over heated. I have also adapted a strange gait because of it which I feel has saved me from falling on my face too many times to count. It is because of this and the fact that my legs don't always want to work that I am looking into a walker. Unfortunately, I'm only 41 and it is embarrassing to have to use a walker at my age. So I'm on the hunt for a sportier walker that doesn't look as obnoxious as the standard walkers do. I have GERD also, which I've never had in my life prior to my MG exacerbation in 2009. I experience the muscle and joint pain but I also have joint stiffness and occasionally feel like my hip and thigh are not working together. My hips feel so weak that I'm not always sure if I will be able to stand up without collapsing. Okay, I guess that is all I can think of at the moment. Thanks for this post. It really hits home for me. Enjoy your weekend everyone. Hugs to all...

Angie

Eve this was my post you remember (the topic was excessive sweating)
Add this to the list of things MG is not supposed to cause along with GERD and hiatal hernia and orthostatic hypotension and migraine, and problems with urination and defecation, and blurry vision.

When you fill in the MGFA registry, mention these things, maybe we can get some research going! A number of these things could be explained on the basis of weak voluntary muscle or weak mixed muscle bundles, but some of this is autonomic and where it fits in is harder to imagine; however when it becomes a common symptom in a group this small, it is hard to say it is not related. Of course it may well be another autoimmune phenomenon, but it does need some recognition as a common accompaniment.

Some of this doesn't get to the doctor because it is embarrassing, some because it falls between specialty cracks and some because it is not "severe" enough to warrant medication. But having adequate treatment or even recognition of these problems as part of our load would be helpful. Unfortunately (for me) count me in on all the above mentioned. b.

Gerd is a big one for me, too. It was one of my first symptoms and has been more or less constant, even when I feel really good.

When I stand in one place for too long (like on the subway) it's hard for me to bend my legs when I do start walking again. I don't know if it's stiffness in the muscles, or joints, or both. And if I get a bit nervous or upset my legs get shaky too.

When I sit with my legs under me, or lay on my side on my arm, I get pins and needles much sooner than I used to.

Blurry vision (separate from trouble focusing because of the muscles around the eyes).

Problems with thermoregulation: when I get cold I can't warm myself up without putting on lots of clothes or sitting in the sun, even if it's not that cold. And then I can't move my hands when I get cold.

I drop things all the time now...I guess this is a problem with fine motor control, which is expected.

And I have a tingling feeling in my feet and legs when I walk or run (relatively) far. Maybe not tingling exactly but a little bubbly or something.

And then, I know some doctors think general fatigue and brain fog aren't symptoms but I have both.

This is so interesting to read everyone's responses! Maybe of the things I listed above I know others on here have too so maybe they aren't atypical. (BTW, I don't have any other diseases besides MG...that I know of.) But I also am guilty of not mentioning my "less severe" symptoms to my doctor, sometimes just because I forget. But I need to tell him everything, even if just so he gets used to hearing it.

The GERD and Hiatal Hernia I have and the surgery for it the soft wrap fundoplicaion. My joint problems are joint pain and with some I do have swelling and redness but not on all. I have also had problems in some with synovial fluid leaking out and had surgery for that. I just assumed that was osteoarthritis which I do have in my spine as well.
Lightheadedness and problems with temperature control and the orthostatic hypotension I assume is from my severe small fiber neuropathy. I do think it is hard sometimes to know what is from what and when I get on line and hear others have the incontinence I have truly wondered about that one. Many journal articles skip over it as being non voluntary but I talked to my urogynecologist about it and for sure there are many effected that are voluntary. I do think mentioning these would have an effect.

I believe I have a lot of problems with Orthostatic hypotension. When I researched this, I came across a lot of scary things that could be the cause, with one of them being form of autonomic failure. Anyways, the reason I am replying because a med that is used to regulate Orthostatic hypotension is, go figure, Mestinon. I thought blood pressure was regulated by our hearts? Why is mestinon used then?

Gravity affects blood pressure via hydrostatic forces (e.g., during standing), and valves in veins, breathing, and pumping from contraction of skeletal muscles also influence blood pressure in veins.[2] Skeletal muscles play a part in bp. That answers my question.

Vieve, I think you have other things going on. One thing read to me from my chart was constellation of symptoms inconsistent with MG. It's a tough one for seroneg's, if we mention these things they start looking for "something else" instead of "something in addition". Thermoregulation seems to relate closely to my Raynaud's, though heat intolerance relates directly to MG and my yet undiagnosed thing. Tingling and limb stiffness go with other disorders that do include brain fog and fatigue. I think you can safely mention with your seropositivity!

Yes, Elinor, I've been in denial. Sigh. I tried to convince myself for months that tingling could be a symptom of MG and maybe it's just not well documented, but I should def mention to my doctor the next time I see him. (I don't think I've told him about it, or at least not pointedly enough.) All of these things I mentioned aren't getting worse, at least; especially the tingling has improved. Maybe it was worse when it was hotter out, or maybe it's just that the Imuran is kicking in now (if I have another auto-immune disease as well). I don't have the typical discoloration of Raynaud's, but it is odd how coldness bothers me so much more than others with MG.

Oh! Here's another good one I thought of and have not told ANYone yet: I have trouble with muscle control when it comes to going to the bathroom, as others do, and also when my symptoms were very bad last year I lost my ability to have an orgasm! Because the muscles wouldn't contract. I've never read that anywhere as being a symptom of MG!