I'd originally posted this on Off Course, and people suggested I come over here to see if anyone was familiar with it. I was diagnosed with MG this past year. So far, I have mostly just ocular symptoms --- like seeing double, which truly is no fun! I also have some muscle weakness in my legs. I know it's an unusual disease, but I was hoping that there might be someone else who can offer me some firsthand knowledge.
I don't ride anymore (gave that up after the realization that, since I have two artificial knees, if I fell off my packer mare I'd probably shatter my leg since the titanium wouldn't give). (Actually, I trail ride a couple of days a year on a lovely little mule owned by a friend.) Heavens, can you imagine a double vision attack while trying to jump a fence? I wouldn't be able to tell which was the REAL fence and which was the not-really-there one! :-O
I'm on pyridostigmine, have upped the dosage on it fairly recently and will probably be upping it again after I see my neurologist on Monday.
The uncertainty, and never knowing when I'll have vision problems, or my legs will get so weak that I have to sit down NOW, is a real problem for me. And even though I don't generally ride anymore, I keep super busy showing two of my dogs in obedience (and vacuuming dog hair...) I'm lucky I can still work and have relatively good insurance, and a great team of doctors.
I met you on off course and suggested you come here. I'm glad you ventured over. Even if people aren't dealing with the same disease, they are quick to offer support. I hope you have a good appointment with your neurologist!
MG, for anyone who doesn't know about it, is an auto-immune neuro-muscular disease. In easy terms, the ACTH produced by the nerve endings is normally "caught" by receiver cells on the muscles --- but in MG, the receiver cells are damaged or destroyed by the immune system. So the muscles don't fire like they should. In many people, it starts with the eyes --- that's why I get double vision attacks. But it also affects leg and arm muscles, facial muscles, throat and respiratory muscles, and can cause a crisis where you are unable to breathe. I wear a medical alert bracelet 24/7 as there are certain medications I can't have, and in any emergency situation, the MG could affect my respiratory system and I could stop breathing. Overall mortality is low (3-5%), it tends to progressively get worse for the first few years you have it, but there is no "normal" pattern to it.
I've found a lot of horse people are also into obedience training with their dogs. And dog people are just as nutty as horse people are! Two years ago. someone dumped a young dog in a friend's yard out in the country, and I got the call to come get the dog. Turned out to be a 9 month old Rough Collie (think Lassie), now named Harry Potter. I started him in training classes because I knew he was smart --- and had so much fun I went into it deeper and did rally training, too, and started showing. Harry earned 3 titles this past year, and also got his CGC and TDI. In November, I adopted an Australian Shepherd from a rescue group --- her owners had to move and couldn't take her --- Cowgirl Dixie has already gotten her CGC and TDI, will start in classes in January, and I'll be showing her and Harry on Jan. 2. My other dog, Rudy, is a Black and Tan Coonhound, and heaven knows, those aren't obedience dogs! I show Harry and Dixie as mixed breed dogs since I don't have papers on either one. It's a lot like showing horses --- you're working with another personality who may not see things quite the same way you do! And the embarrassing moments are just as hilarious --- like when Harry jumped out of one show ring and into another and went dancing around it out of everyone's reach!
I gave up riding horses on my terms --- it was my decision based on the scary fact that a fall would have left me crippled (I have artificial knees, and my leg bones would likely snap). I don't regret it, still ride Chuckie da Mule in the summer. I'm hoping I don't have to give that up. Just thinking about maybe having a double vision attack while riding makes me turn green!
Whoa, major shock yesterday at the neurologists. Now she's decided that I *don't* have MG. Of course, she can't explain why I have double vision attacks, why my eye sight is deteriorating, why the weakness that comes and goes. I don't know whether to laugh or to cry. It's back to the drawing board. I was able to set an appointment to see my primary care doctor next week, and I have an appointment with an opthamologist for later in January. She seems to think there are multiple things going on at the same time --- something involving my vision, obviously, and maybe a heart/lung problem. (Say what? I've NEVER had a heart or lung problem and I'm sure I don't now.) I'm due for another double vision attack any day now --- they'd gotten pretty regular at one every 2-3 weeks, but sometimes every day.
I'm puzzled for you. My stem cell guru doesn't have a specialty in neuro, so he didn't have any ideas to send along to you.
You mentioned that there is getting to be a pattern. Are there any environmental parts to the pattern? stress? Given, that I am not a dr or play one one tv, I am asking from my horse symptoms sleuthing.
For example, carbon monoxide from the chimney in the house I grew up in eventually was connected to a chimney fire. I have asthma and I am like a canary in a coal mine, if the air is tainted, especially with carbon monoxide, I react quickly.
Whicker, *most* of my attacks have been in the morning --- driving to work, driving to a dog show, driving to a robotics competition where I volunteered. In the afternoons, if I have a problem it's usually more of a problem with letters and words being shadowed or hazy when I look at the computer screen. I think there's been one or two afternoon double vision attacks. So that may be a pattern, although I don't quite know how to interpret it. And I got a new car this summer, so it wasn't anything in the car --- had the problem with both cars.
The hope is that the opthamologist may be fresh eyes --- no pun intended, but at least he may know of some obscure problem that causes double vision and overall vision deterioration.
Even my primary care doctor, who I see on Monday, may have some idea or other that might make sense. (He used to be a vet, we get along fine, and he and his staff insist I bring a dog in with me when I come!)
It's really frustrating not knowing what's going on. Having MG wasn't any fun at all, but it's worse not knowing what I have --- is it the creeping beri-beri that will make me grow a 3rd arm out of my stomach (which might be helpful), or is it something that will, in time, destroy my vision? Two of my doctors have already gone back to the "We know it's NOT a brain tumor" because my MRIs and CT scans all came out wonderfully clean. (Hey, and it also proved I had a brain, which some of my friends still argue about...)
Thanks for your support and ideas. I'll keep you filled in on what happens.
I (personally) don't have Myasthenia Gravis, but my paternal grandma died from it and now my paternal uncle has it. My grandma's got out of control and she passed away due to complications associated with it (about 10 years ago). My uncle seems to be doing okay presently. He's had a few scares with it (I think he's had a heart attack after the diagnosis, IIRC) but he's managing with proper medication (couldn't tell you what it is).
It's a horrible disease (and I think genetic, which in that case, UGGH)... so I do hope for your sake you don't have it. But, I also hope you can figure out what the heck is going on. I can't imagine having all that double vision and everything else.
Just throwing this out there, cause I tend to look at the BIG picture. Have you been checked out at all by a chiropractor? or another doctor that's not a "conventional" doctor? The reason why I ask is because lots of my neuro issues (due to permanent nerve damage from falling and being dragged from my horse) were not "fixable" by conventional meds & routes. I ended up seeking (and finding) an excellent chiropractor. With her help and the help of a massage therapist and physical therapist (who does more myofascial release stuff) most of my issues are "cured". I've had all the regular battery of tests run on me also. One neurologist thought I may have MS. Needless to say, he truly was a "quack" and the CT scan mostly ruled that diagnosis out (I was NOT going to have a lumbar puncture done - I watch House too often ). But, before we found a way to "fix" me (it's an ongoing battle still, but my issues are nothing like they were before) I had everything done, from MRIs to CT scans to an EMG (I think that's what it was called... it sends electric shocks into your nerves... EXTREMELY painful, d*mn neurologist was an *ss about the whole procedure).
Anyways, justa thought (about "alternative" medicine). I hope you find out what's truly the the cause of all the issues. Good luck with everything and don't give up until you're satisified with the answer(s) given to you.
You are in Missouri, right? There is a great stem cell dr/guru based in St. Louis. He has an osteopathy background as well as medical. We came out to see him about my DH disc/spine and he has been quite successful with regenerating the entire shoulder joint for my DD.
I got to visit DressageGeek at the same time as a bonus. It would be a great alternative perspective. Since I have been watching Gray's Anatomy on dvd with my recuperating DH and DD for the last month, I do wonder about pinched nerves or other pieces in the spine. Your arms are in a particular position for quite a while for both computer and driving as is your head. I have cervical spine issues from being stepped on my horse after a fall. It has taken many different types of approach to sort out the puzzle.
I have had the carbon monoxide problem in multiple cars, some of them brand new, because of back draft, manufacturing and design errors or blocked vents. That's without checking to see if the exhaust system has leaks from doing farm or foxhunting driving. Dirt roads can do wonders. Even driving in rush hour or tailgating can do it.
Keep a log of each occurance and there should be more pieces of the puzzle. pm if you want more info about the guru.
I'm sure that this has already been ruled out, but could it be MS? Glad you're seeing an eye doctor, that definitely sounds like a good step. The only helpful thing I could offer, although it sounds as if you're on top of this, would be to keep a journal. I have found several times with the horses that it really helps to see patterns that it's easy to miss otherwise (especially for those of us who are not at all time-oriented). Good luck!!! I hope that they reach a diagnosis soon, so that you at least know what you're dealing with.
I am glad you are getting a consult from an Opthalmologist, and in the meantime look up via search engine the 5% of the population that gets migraine variant ocular symptoms with no headache, as a possible explanation of the diplopia (double vision). I hope the several Doctors who are going to look at you and your constellation of symptoms will be able to help!
RIP Sasha, best dog ever, pictured shortly before she died, Death either by euthanasia or natural causes is only the end of the animal inhabiting its body; I believe the spirit lives on.
Thanks for the replies and suggestions. I've wondered about MS, but that hasn't even been suggested yet --- but I am going to look up more info on it to see if it should be ruled out. My CT and MRI were normal, so maybe that's what is it ruling it out.
The variant migraines were something I thought about, too --- my mom used to get those --- just the visual part. But my overall vision has been deteriorating since this started to where I need new lenses in my glasses every 6 months --- and that is not right by anyone's standards! (Plus it's really, really expensive.)
This afternoon I go back to my primary care doctor to start from scratch and see if he has any ideas. I won't be able to see the eye doctor until the end of January --- I hate all of the waiting. If these two can't figure anything out, I'm just going to put the entire problem on the back burner until it gets bad enough that something will make sense and I can get a diagnosis.
I'd be willing to try a chiro --- if my insurance would cover it. Even with pretty good insurance, I've spent about $5K on co-payments this year for doctors, medicine, new glasses x2, etc. I'd have to pay totally out-of-pocket for a chiro, and that just isn't going to happen.
Donkaloosa, not sure when you were originally diagnosed w/MG but sometimes people get false negative readings from their blood work. My daughter was diagnosed 9 yrs ago at the age of 17. One of her 1st symptoms was double vision. We took her to the eye Dr, who suspected MG. Her blood work came back high positive. She also had alot of muscle weakness in the arms & legs and could barely swallow. We sought treatment immediately, once we knew what we were dealing with. It was a long scary road but today she manages her disease and is an equine professional and continues to event. good luck!
My blood work all came back negative, which didn't seem to surprise the neurologist because there is a "non-antibody" form of MG. But hearing that your daughter had the same initial symptoms makes me think that in the end, they'll go back to the MG diagnosis. I'm glad to hear that she's doing so well. I've had some leg weakness that has been a nuisance, but I can work around that for now --- but I'm just not doing things like climbing on ladders or anything that could lead to a nasty fall.
This is all sort of interesting in a scientific, clinical sort of way --- but it sure isn't much fun when you are the patient/victim! :-)
Keep your chin up...I went thru the whole not knowing process...they still dont know. I still get the weird visual disturbances and other symptoms occasionally but try not to let it bother me too much.~its been over a year since my first 'attack'. I just remember my limitations and try to not worry too much.
Big Hugggs to you
Leslie, are we twins??? :-) Those limitations are a pain, though. I get so frustrated when I'm driving somewhere and suddenly am seeing double. I have gotten smart enough to pull off the road if at all possible and wait the attack out --- usually 20 minutes or so. I also try and avoid driving at night because the lights start driving me crazy --- not all the time, but sometimes I can't really tell what lights are real and which aren't, and car headlights get all starry looking and distracting.
Like I told my primary care doctor yesterday (who is a whopping 3 years younger than me), it's hell getting old!
Van Gogh painting, EXACTLY right! My personal biggest problem is driving home from north Florissant, down Lindbergh, at night, after dog classes. I quit teaching classes on another night because I just couldn't take making that trip 2x a week --- once was bad enough.
I don't even want to think about throwing deer into that problem! Have you considered putting "roo bars" onto your car? (Those are the bars that people in Australia use to help prevent vehicle damage from hitting kangaroos on the road.)
True, I'm not dead yet --- but I'm sure watching out for those killer rabbits!
Some of the more urban counties don't like the roo bars. They think it gives an unfair advantage. Fauquier and Rappahannock allow them, but when my friends head toward D.C., the police can be squirrely. They think that the small vehicles without them will be in worse shape in an accident with a vehicle that has roo bars.
I drive a non PC full size suv that is my tow/farm/everywhere vehicle. I use 2 sets of deer whistles at the same time. My theory is that they will be louder and not tuned to each other. So far, all different kinds of animals leave quickly, shaking their heads. Haven't had any loitering, even skunks. They don't work below 35mph. (Not even the skunks, something about a union contract.)
I also carry the Holy Hand Grenade of Antioch, just in case.