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Old 07-06-2017, 11:03 AM #1
winic1 winic1 is offline
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Default How often do you see your MG doctor?

Just wondering, does the doctor you see for your MG have you come in for regular visits, or only if YOU feel the need to see them?

I know she's (neurologist) waiting to see what the super-specialist at Yale has to say, (appointment in 2 weeks, been waiting almost 7 months to get in there), but it seems like if she never saw me again, they'd just keep refilling the pyridostigmine prescription and not care one bit.

Took 16 years to finally get someone to make a tentative diagnosis, even tho 6 years ago my ophthalmologist diagnosed it as MG and I've seen so many doctors since then trying to get it confirmed (AChR negative, EMG negative, no blood test=no diagnosis around here), so it's not like I can just dump her for another.

Just wondering should I insist she step up, or just keep figuring out and handling things on my own, which is what I have been doing for so many years anyway? Seems like she should be doing something, but then again, what would she do if I am managing myself to avoid having worse problems anyway?

So what do YOUR doctors do for/with you?
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Old 07-06-2017, 11:15 AM #2
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I see my neurologist once a year. However, if I need to talk to him, I just leave him a message with his nurse and he always returns my call within an hour. I realize most docs are not that responsive, but his attitude is that if I call him, I must be in crisis and he needs to respond quickly. Love him!
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Old 07-06-2017, 12:56 PM #3
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Hi Winic1,

It's a little awkward when doctors refer you to a University hospital for another opinion. In my experience, yes, they do often wait to hear how that appointment goes before they see you again. However, if you are having trouble, you should call your local doctor. Generally, you end up keeping both doctors, if you will be seen at the University. You might see them occasionally, but you will see your local doctor on a more regular basis. When you finish an appointment, you need to ask the doctor when you should make the followup appointment. Ask what the doctor's policy is, and when you should be in touch if you have any concerns about contacting the doctor. Ask what symptoms should prompt a call. I would say generally if you notice increasing weakness, more trouble breathing, more trouble swallowing - either call your neurologist or get to the ER.

I am seeing my neurologist quite frequently right now, but I have had a lot more issues lately. I am seeing her about every 2-3 weeks. I also know I can call her, and she would do her best to get back to me, but if it were a serious issue, I should just go to the ER. It's hard, but I do have to communicate with the doctors' offices regularly. It's often the thing you least want to do when you feel unwell, but you have to do so if your symptoms are giving you difficulty.

Take good care of yourself, and hang in there!

Take care,
Erin
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Old 07-06-2017, 01:54 PM #4
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Around here, you only go to the ER if you are pretty sure you will probably die if you don't. Because otherwise, they are more likely to increase your odds of things going badly, than decrease them. It's not a good place. And I doubt they've ever seen a case of MG. And I noticed my gp, who is part of the huge system that owns everyone around here, still hasn't entered MG on my medical record, probably because the neurologist is outside the area, and she is still reluctant to call it that because she's never had a seronegative MG before. But, the pyridostigmine works, other people can see the difference in me, so if it isn't MG, then what is it?

Really suspect she hopes I'll just go away. Scary to have to diagnose someone based on only symptoms and your own intelligence, instead of having a lab report to do it for you.
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Old 07-06-2017, 05:47 PM #5
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There are doctors who are afraid to claim a diagnosis without an expert's opinion. Don't see her as not believing that you have MG, but rather her personal inability to commit to that. Yes, most of this is all about the doctors and not us!

Wait until you see the expert, unless you do have serious symptoms. Do not wait to go to the hospital!! MG can tank rather quickly and there's no way to know how quickly that will happen.

You can set yourself up for success at that hospital. You can always call their patient representative and ask a bunch of questions. Ask if they have a protocol in place for MG patients and what that is. Ask for a copy of it! And then, if you have to go in, you can bring a copy of that with you!

You're lucky that she is taking that chance and giving you Mestinon. Try not to read anything into who she is or how she sees you. Heck, they forget about patients the moment they leave the office! For them, this is a job. I'm glad she gave you Mestinon, or you might be in real trouble right now.

I see my neuro once a year, unless I'm doing worse. If I'm very weak, I would just go straight to the hospital!

Maybe you just need some reassurance! Please know that there are very few diseases that act like MG. Only LEMS and the CMS's do. The chance of you having a positive response to Mestinon and not having MG is very low. Try not to doubt what your instincts are telling you! I know that it's hard without rock solid proof, but many conditions doctors treat have even less proof than you have for MG!

I really hope they can figure out a way to completely diagnose you! A muscle biopsy would be another thing they could do. Have you had breathing tests? Have they shown a restrictive pattern? Have you had MIP and MEP? Do you have copies of those tests?

There is a lot of evidence to be found in someone with MG. There's Cogan's lid twitch.

Cogan's lid twitch sign - YouTube

There's enhanced ptosis. When a dominant droopy eyelid is pulled up, the other eyelid goes down while the dominant one raises. Then they play seesaw for a bit!

Enhanced Ptosis in Myasthenia Gravis | JAMA Neurology | The JAMA Network
Enhanced ptosis, mg, - YouTube
Medscape: Medscape Access

A smart neuro will look at EVERYTHING to base a diagnosis on, not just negative tests. A negative doesn't prove anything!

I hope the appt. goes well and that you finally have answers soon!


Annie

Last edited by AnnieB3; 07-06-2017 at 11:08 PM.
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Old 07-06-2017, 08:40 PM #6
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No, oops, I didn't make it clear. This is the Neurologist I am talking about, not my GP. A neurologist with experience and reputation for MG. But I don't have a piece of paper certifying that it's MG. Therefore, no one wants to go out on a limb and call it MG. That's why she wants me to go see the super-specialist neurologist at Yale. So it's not HER say so, it's his.

My ophthalmologist named MG six years ago. But AChR is negative, therefore everyone (several local neuros, as well as a supposed MG neuro, and a neuro-ophthalmologist but he was senile, genuinely senile now but the biggest name in the region) said no, or simply passed me off to someone else to have them deal with whatever it is. I have been bounced around more than a pinball ball at the biggest beer and pizza joint in town. "Go to this doc, tell them I said this" "Go to that doc, tell him I said that" "Go to the other doc, tell them I said ..." :"Go back to that doc, tell them I said this" "Go back to this doc, tell them..." None of them tell each other directly by email or records, they tell me to tell them, but no one takes the patient's word for it, yet they then send me onward to tell the next one... Until I get fed up and give up for a while.

Started 16 years ago. What would you say to someone who couldn't stand, still, and talk at the same time, without having to heave a big breath every two words? Who was so exhausted and weak, that after having walked 100 feet down a hallway and down a flight of stairs to the microwave, that she just had to sit there while her lunch got warmed up, sit and lean against something, not even holding her own head up? Who, having to walk back up the stairs and 100 feet back to her desk carrying that lunch, would just sit there, staring at the food because she was too weak to lift her arms and get the food into her mouth? Arms hanging weakly at her sides, unable to lift them to the desk until she rested several minutes? And on and on and on with weakness and breathing problems?

Well, if she's pregnant, you hold your hands up like a cross because "you're pregnant, go see your OB". Only the OB's kept going, "This is NOT pregnancy, go see your doctor." And back and forth like that. And it gets better once you have the baby, but not entirely, and you have no idea what it is for years, until the eye doctor says MG and you read up on it and THAT'S IT!!! THAT'S WHAT WAS WRONG, THIS SOUNDS LIKE EVERYTHING I WOULD HAVE WRITTEN MYSELF!!!! EXACTLY!!!! COMPLETELY!!!!

But, because you're always the weirdest case, you're sero-negative, so you become the pinball ball, just getting thrown back and forth across the system.

When standing gets difficult, I stop and sit. When sitting is hard, I lay back. When arms won't work, I stop. When breathing gets difficult, I stop everything else and breathe. What I read as the "breathing test' of how few words you can comfortably say indicating you are in trouble, well, that's my normal and has been for years. I manage myself, making do with whatever I am capable of at the moment. Sometimes, everything gets put into breathing. Other times, good days, I'm walking the dog through the woods, with lots of sitting-on-rocks-to-rest breaks.

I've been sent, in the past, for breathing tests, but they only present the best run of each test to the pulmonologist, not all of them. So they don't see the patterns, and they don't see how hard I am working to achieve those results.
I have been sent for sleep tests (because if you mention breathing problems, that might mean sleep apnea and therefore a cpap. that's all they can comprehend.) Well, I don't have sleep apnea. But, I do sometimes just slow down and breathe really slow and shallowly. "Yes, we saw that" they said. I asked what it was--no answer. One guy said something like, "well, you may have apnea, but you don't have SLEEP apnea." and sent me out the door because sleep apnea needs a cpap and that's all they care about. (I told you, you avoid the ER or hospital at all costs, around here. It's just not good.)

So, this is a neurologist I'm talking about. Who said, kind of, 'well, I don't think it's MG, but here, try mestinon and let's see if anything happens." Well, stuff happened. People who see me only once in a while are commenting on what a difference, how I'm walking better, looking better. It's that noticeable.

And her abysmal office staff will not cooperate on providing the information needed to get my insurance to agree to cover the MuSK test, have had an inside person at my insurance trying to get the info out of them for 6 months, since she ordered the test for me. Office personnel keep saying, no, we don't need to, we called the insurance and they said the lab was in network. I have someone FROM MY INSURANCE telling them no, not this test, needs pre-cert, and they won't do it. Her office people suck like a black hole. Hoping super-specialist's office will be better and get it approved for me. Tho if I'm sero-negative for that, also, then I'm probably doubly screwed, two strikes and I'm probably out on my butt again.

Just wondering what a typical MG doc does for/with their patients. I'm used to just living with it and managing with it all on my own, as I have for 16 years. But wondering if perhaps I shouldn't be, or shouldn't have to be.

(and yes, when I see super-specialist, I am going to ask if he knows of a neuro a little closer to home, or at least no farther away than this neuro who sent me to him, who might be better to work with. Superspecialist is an hour and a half away, I had to give up driving several years ago, so hubby is taking the day off of work to get me there. Can't do that too often, so I need someone closer for regular usage.)
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Old 07-06-2017, 11:42 PM #7
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I think I'm having one of those days! There was nothing you said that spun me in the wrong direction! I fixed my post.

I'm glad you got all of that off your shoulders! Isn't doctoring fun?

The runaround you are having is typical of doctors who don't like paperwork. My neuro even did a tier exception for Mestinon for me. He's not a MG expert. He's definitely not perfect. He's nice, but that only goes so far, too.

Don't forget that doctors are actually rated on how many tests they perform, etc. Pretty stupid and not very useful.

Sometimes you have to find a good neuro who is willing to do what it takes to help you, even if they aren't an expert. As you said, maybe the expert will know of someone willing to go to bat for you!

Apnea that isn't sleep apnea? Well, couldn't that be hypoxemia from weak muscles due to MG? Maybe that was an insecure resident who couldn't come up with other ideas for cessation of breathing while sleeping!

You have a right to see all PFTs. That is your right as a patient, so you have to stand up for yourself. They don't have the right to keep that from you. You paid for those tests, after all. MG is all about trends. Sure, if you do the same each time, no biggie. But if a MIP or MEP keeps going downward with each attempt, that shows an unstable MG situation! Then they should do an arterial blood gas. And a walking O2.

There are not many people in the medical world who truly understand MG. So we have to be our best advocates. Calm, patient, logical advocates, even if we want to scream our heads off at them!

You need a patient advocate or someone willing to be "in charge" when you see someone. Seriously. This is similar to needing witnesses in court. Your testimony alone should be enough, but it helps if someone else has witnessed what you have gone through. And can stand up to them to make sure you have the care you need!

Please ask for the MuSK from the expert, plus a redo of AChR antibodies. You aren't on any other drugs, are you? Have they ever tested your IgG antibodies, and all 4 subclasses? If that is low, the AChR test can have a false negative.

I hate this kind of doctoring. As if proof is something that is your responsibility! It's not. They are responsible for figuring this out. And doing nothing does not let them off the "First, do no harm" hook. Doing nothing in your case is as harmful as doing something wrong.

I've been through nightmarish doctoring, where my life was at risk. Not something anyone should have to experience. Definitely not more than once. I feel for you and what you've been through. Let's hope you find answers and can attempt to live in peace! And have adequate treatment.


Annie
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Old 07-07-2017, 09:00 AM #8
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I'm on lots of drugs--lisinopril, verapamil, timolol, xalatan, latanoprost, baby aspirin, and recently started 600mg ibuprofen twice a day because, while five different doctors in the last year and a half (most of them orthopedics), and my gp twice, have said it looks like I have rheumatoid arthritis, the rheumies say No because--you guessed it--negative blood test (even tho it was barely positive the first time, and the sub-tests showed stuff, negative the second time despite a very high sed rate, and I've found things saying up to 38% of people get negative blood tests, that's nearly 2 out of every 5 with the disease!), and no blood test means no problem. (It really, really sucks around here, ever since the latest corporation bought out everyone.)

Yes, timolol is on the hit list, but, before that I was on Cosopt, and when I finally found something saying it could make MG worse, and stopped it, my eye muscle dysfunction got SO MUCH better, but my glaucoma got worse. So we tried the dorzolamide-only component, and within 2 days things were horrible again. So we tried the timolol only component, and not so much problems, so we stayed with that, because going blind is not a fun prospect. (also had to do a laser trabeculotomy, and tried a number of other eye drops, none of which worked, I have now tried them all, many of them twice. Always gotta be that special case...)

Can ibuprofen mess with things? Because I seem to be more out of breath since starting that. But summer is also heating up, and the humidity rising, and humidity has always hit me very hard, much harder than heat does, although in my house we have central air which pretty much controls both. The ibuprofen makes a huge difference on my being able to move after waking up in the morning, and after any time I've been sitting, and of course, with MG, I do a lot of sitting. Good thing I don't have rheumatoid arthritis or just imagine the mess of pain and problems I would be. (go back and read that last line with the worst sarcastic voice and attitude you can imagine....)
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Old 07-07-2017, 11:31 AM #9
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Do you mind if I ask who put you on an ACE inhibitor and a calcium channel blocker? Those two alone can be responsible for weakness. And why are you on three eye drops at once (or are you not on three at once)?

Did no one tell you that you shouldn't have aspirin, not even baby aspirin, and Ibuprofen together? Does the doctor who prescribed baby aspirin (or did you just start taking it?) know that you are on Ibuprofen? Simply because we have access to OTCs does not mean they are harmless. You could be at risk for a bleed. Also, when a person takes an antiprostaglandin, a good prostaglandin such as flax oil should be taken as well. Drugs such as Ibuprofen reduce the gel coating of the stomach and can cause a bleed or other issues such as gastritis.

I think you need to discuss your meds with whatever doctor prescribed them. I'm not a doctor, but I know when too many meds is not necessarily a good thing, especially heart meds. Please take some time to discuss anything you are on, even supplements, with your doctors (again).

None of those drugs would mask the signs of MG, but the cardio drugs can make MG worse. No, I'm not saying you shouldn't be on them!!! But you should be aware of the effects of any drugs that go into your body.

Annie
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Old 07-07-2017, 01:18 PM #10
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Same cardiologist put me on both heart medicines, first for spiking blood pressure (to scary high levels), second for spiking heart rate, both due to developing vascular thoracic outlet syndrome from scarring from broken, unhealing clavicle following major car crash. When the shoulder problems trigger, which can happen with the smallest wrong move of the shoulder or arm, it does all kinds of evil things to the rest of me. (Untreatable, you can't fix scar tissue by surgery, it just makes more. Like trying to fix a hole in your clothes by cutting it out.) She also cleared the addition of the ibuprofen to the baby aspirin. Not enough there to be significant. Not thrilled with the ibuprofen long term, but I got no other ideas for cutting the joint and back pain enough to keep functioning, and no one but me cares about it.

I am on two glaucoma eye drops, not three. Different modes of action. you do that when you have intractable normal tension glaucoma that is continuing to progress. Was stable on the cosopt, but immediately went downhill as soon as I stopped that, and this was the best we could come up with in addition to the laser surgery (and took a year to re-stabilize.) I've got two years until my daughter graduates high school, I cannot lose my sight before then, I want, I need, to see her cross the stage.

Ibuprofen has never bothered my stomach, used to take it in huge doses, dry, (nothing but spit to swallow it) to deal with massive cramps, with no problem. Aspirin is murder on my stomach, otherwise I'd just up my daily aspirin instead.

yes, Ibuprofen can increase blood pressure, but then so does pain, so if I'm going to end up with the same result, I'd rather feel better while doing so.
yes, I know that a bunch of these things can cause further problems.
no, I don't expect to live a long life. My goal is to get my daughter out of high school and off to college, which seems to me to be launching her towards her adult life. Anything beyond that will be a bonus. That's why I'm still trying to get something done to help me stay functional. Otherwise, I would have gladly just sat down on the couch and stopped trying, stopped doing, and eventually stopped existing. But I'm not there yet, until I get this last kid launched.
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