Advice for getting ENOUGH medication from doctor
 

I've told my story previously... but basically I am newly diagnosed. My neuro and opthamologists misdiagnosed me with multiple cranial nerve palsies and it took my constant freaking out for the neuro to finally schedule me for the Myasthenia Gravis blood test. He laughed and said he was sure I didn't have it and for my "peace of mind," he would set it up. 3 1/2 weeks later, I got the results and I am positive. He prescribed me 20mg of Prednisone only.

Within a few weeks, my symptoms have rapidly spread from severe double vision and blurriness to facial muscles, my tongue, my throat muscles and my arms and shoulders. I can live with everything except the throat muscles. I am having trouble swallowing and in the past few weeks, I have had 3 incidents of choking, usually going without breath for minutes while choking, Food just stops in the middle of my throat and I'm unable to swallow it or spit it up.

My primary care physician questioned why the Neurologist didn't give me Mestinon and gave me a prescription for 60mg, twice a day. I take it before breakfast and dinner and it gives me a few hours where I can swallow my food. I also have issues swallowing mucus and saliva at times, which kept me up at night. The primary care then prescribed the extended release Mestonin, but is adamant that it "lasts for 24 hours" and also can not be taken with the regular version. I am now having issues throughout the entire day of swallowing problems and it's almost impossible for me to talk by early evening. I have called and begged for more, I even printed out the medication brochure and highlighted the proper dosages and average use. Now, he won't return my calls at all. The neuro refuses to up the dose because he said he didn't prescribe it.

I have an appointment with an MG specialist, but not until the second week of December! So what do I do? Will I have to go to the emergency room of the hospital where that specialist is to get quicker attention? His office said the specialist can not prescribe anything until he sees me. I even described my horrible swallowing issues and choking. I also have difficulty breathing at times.

I do not understand why this is all being taken so lightly by the doctors.

Wow, that's an awful situation to be in, especially since you know you're right. I do think ER is a viable option. It's always a gamble as to whether or not you will get a good team once you are there, but if you go armed with your prescription bottles, and literature, that should help. Personally, I have never had a problem with ER and I live in a rural town that doesn't see much of anything other than oldies, kids with ear infections and folks with farm injuries.

You seem very aware of the importance of breathing and swallowing, which is good. It sounds obvious, but many people get themselves into trouble by waiting to see if things improve. Trust your gut when you feel things are getting out of your comfort zone. At that point, head to ER.

Best of luck to you.

Swallowing
 

Now, even with the Mestonin, I am having trouble swallowing. I can not tell if the food has gone down or is stuck in my throat until the next attempt to swallow. I spent over an hour last night attempting to eat chinese food. I end up choking a lot of it up and struggling to get some to go down fully. Originally, I could drink some fluids between bites to wash food down, but now the muscles seem to be practically not working at all, so the liquids just come out my nose.

I just wasn't sure what a hospital emergency room COULD do. I live in a small town where the hospitals aren't probably able to do anything. But I can take a train over to Philadelphia where the specialist is located. Perhaps they would at least speak to him and because I'd be in the ER or admitted, he could prescribe enough medications or a course of action. I am ignoring a lot of muscle issues elsewhere, but my throat muscles have me petrified. My insurance relies on referrals and my family doctor is not only ignoring my calls and letter for more meds, but he hasn't put in for the referral for the appointment I was able to secure with this MG specialist next month. I'm also hoping if I go to their ER, they could give me that referral. This is just so frustrating because I've only had symptoms for a little over 2 months and it has hit me like a freight train. But the current doctors are acting like it's just a common cold.

Small ERs stabilize you and then can transfer you to the appropriate facility. They can also sometimes find you a doc who can see you sooner.

I would hesitate to ride a train to ER. That kind of negates the actual "emergency" part of the deal in the eyes of the ER staff. It also is risky if you are having a lot of trouble.

In any case, it sounds like you are in need of more help sooner than later. If I were you, I'd formulate a plan and act.

Hi JerzyBoy,
What a pity to rely on people with little experience...
Regular Mestinon acts for about 3 to 4 hours and is normally taken during the day. To cope with the night period and facilitate life in the morning, slow release Mestinon is normally prescribed to be taken just before going to bed and acts for 12 hrs.
Forget about your present neuro and go back to your primary care physican, explain your situation and try to have him prescribe about 4x60 mg per day to be taken every 4 hours and take the slow release nightly.
You could also take two slow release per day, one in the morning and the other at night.
This until you see the MG specialist.
If your symptoms worsen, reduce the Mestinon dosage.
Be careful with swallowing problems, choking could be lethal...
Take more meals of reduced quantities, do not speak while chewing or swallowing (the same muscles are involved), drink liquids with a straw and take little sips. While swallowing, your jaw shoud be about 2 inches from your chin. Mix your meat wih a blender and do not hesitate to add spices. Some foods are easier to chew and swallow than other. Lettuce for ex, requires a lot of work for little benefits, I found raviolis smarter than spaghetti, aso...
Were you advised to avoid medications which increase MG, were you advised to avoid beverages containing quinine?
The MG specialist should give you the appropriate treatment for your case.
Keep us informed.
Maurice.

So the extended version lasts for about 12 hours? I read on the Mestonin website that it lasts 2.5 x's longer than the standard 60mg version, but everyone has a different opinion on how long the standard 60mg version lasts. I don't want to take too much because it is definitely giving me a huge saliva issue.

Also, when should I expect ANY relief of symptoms? I have been dealing with extreme horizontal and vertical double vision that is 24/7. Along with that, I have bad blurriness. I have issues with muscles in my face, my tongue, swallowing muscles, speaking muscles and it's also in my arms. The day this struck me in August, I was going to the gym 4 times a week. Now, I can barely lift 10lb dumbbells a few times. And this 24 hours a day. At no time do I feel I can lift things, etc. I am taking 20mg of Prednisone, 180 extended Mestonin twice a day and also 1 or 2 60mg standard Mestonin. I still have trouble speaking at times and my neck muscles always are sore, I guess from supporting my head. I also have an issue where I can never lay flat on my stomach or my back. Immediately after I do this, I have trouble breathing. And this doesn't really make much sense to me.

So sorry you are having so many symptoms. I've been there, still go there from time to time.

It's my understanding that Timespans work about 8 hours or so, which is closer to what you've learned as well. The saliva issue can be caused from both too much or too little mestinon, so it may take a while to find a balance.

As for when you can expect symptoms to improve, that is impossible to say. I am pretty certain you are not properly medicated. The pred dosage is relatively small, the mestinon dosage too low and almost everyone requires polypharmacy to get relief when symptoms are so troubling. It will take time to find a combo that provides relief. In the meantime, the gym is probably not the best place for you, even if you aren't doing big workouts.

Take care.

I fully agree with 4-eyes, you are definitely not properly medicated. You didn't tell that you were taking 20 mg/d Pred, when did you start this? Did your condition worsened with Pred? If yes, this is quite common but your dosage will probably be increased to 1 mg/kg of your weight. The early stages of your MG are the same as mine and it took about 1 to 2 months at 50 mg Pred for the double vision to disappear. Limb weakness (I had trouble brushing my teeth...) stayed much longer despite Cellcept, IVIG and only Plex with Mestinon (6x60 mg + 1 timespan) were effective.
Curiousy my early weakness was in the arms, the legs were OK but after 6 months, the weakness switched to my legs and the arms gradually improved. Laying flat is usually very difficult (saliva swallowing...) and I was sleeping half sit.
Again, with 4-eyes, avoid gym...
Maurice.

Hi, Jerzy Boy. Welcome.

You know how when you get stressed about something and get tense? You need to practice relaxing your muscles throughout the day. You might not even know that you are tensing up your swallowing/neck/head muscles. After a while, you get used to being in a relaxed mode all day to try to avoid getting too weak. By tensing up, you are making muscles weaker. ;)

Then don't lie on your back or stomach! :cool: MG tells you what it can or can't do, so roll with the punches.

I sure can't do either. I always sleep on my side, propped up with two pillows (Homedics pillow from HSN, since it supports my head well). You could even try a neck brace to support your head and neck muscles throughout the day. Even a U-shaped pillow can take the tension off of those muscles while sitting. I like the buckwheat hull pillows because they're cool and not rock hard like some are.

I have similar questions about the steroids. When did you start and how soon afterward did you feel worse? Did they advise you on taking good prostaglandins while on that anti-prostaglandin drug (i.e., fish/olive/flax oil, etc.)?! Did they recommend that you take vitamin D and calcium while on it? Any advice?

Other things that can make you weaker are electrolyte imbalances, thyroid conditions, and a B12 deficiency. Make sure that they aren't missing something. Many of us have more than one thing going on.

Mestinon Timespan doesn't last more than 12 hours. That doctor needs to read up on it.

A Mestinon tablet or syrup usually kick in after about 30 minutes. Two hours after that (2-1/2 hours after taking it), it wears off. You get about two good hours of use.

The symptoms of too much and not enough are very similar, so you have to go by how you feel when it wears off (partly). If you feel worse after taking it, you might be taking too much. If you feel stronger, then it's working.

Side effects like increased salivation can go away after initial use. How long have you been taking it?

Ditto on what 4-eyes said. NEVER take a train to get any care. Have your doctor write out what's wrong and what to do if you get worse. They can always transfer you via an ambulance if need be. That's invaluable. Even oxygen will help you on route to getting more help.

You really need to have a conversation with someone soon about your condition, even if over the phone. Call your neuro's nurse and discuss this—in the morning when your swallow is better.

Until you get to know MG better, SLOW DOWN. Ditto on the no gym thing. You're not normal anymore, so your lifestyle needs to reflect that. It's really hard to get used to any disease, but MG is very tricky. It's not only "the more you do the worse you get." MG can have a cumulative effect and it can make you suddenly weak if you push too far. So give yourself some time to get used to living with it, learning as much as you can, and stabilizing it with a better treatment. Even so, one of the best treatments for MG is balancing activity with rest.

I know this sucks. We all do. But MG is not as benign as a common cold. It can kill us. You can get through this and be okay, but not without some modifications to your life. And asking for help when you need it.

Take it easy and call the neuro's office.

Annie

Annie,
Thanks for the long reply and so much info.

I am waiting on an MG specialist... I have an appointment on December 2. I finally got the appointment and the referral.

The problem I am facing is that my family doctor doesn't know anything about Myasthenia Gravis. He said he has had one patient and in his words "he lived to be 93 and died from heart issues." I was originally referred to the Neurologist for ADHD, but MG hit me a few weeks before my appointment. So when I got to my Neuro, he just continued misdiagnosing my double vision and BOTH eyelid droop (one at a time) as multiple cranial nerve palsies. During 2 examinations, he said I definitely had the palsies and even after I googled "alternate eyelid drooping" and it kept only coming up with MG results, he laughed at me and said I did not have it. I suffer from anxiety and eventually went into "insanity Google mode" where despite my vision being doubled horizontally and vertically, I spent all day and night Googling MG. Finally, my neuro scheduled the MG blood test "to put my mind at ease." There is only one company that does this test, so the results took over 3 weeks. When I went back to the Neuro, he apologized and said I tested positive. By then, I was having issues with my tongue and shortly after, it spread to my swallowing muscles, neck, face and chin muscles, shoulders, arms and now my hands are extremely sore and weak, but I don't know if MG can do that. That Neuro gave me a referral to another MG specialist, but I couldn't get an appointment until the end of December, so I had my family doctor give me a referral for what I believe is a better doctor and hospital in Philadelphia. This current Neuro said he wouldn't give me other meds "due to possible side effects," but he gave me Prednisone. I started at 10mg for 1 week and then 20mg since. I have been taking this dosage for a month now. I feel NO improvements, in fact, my vision blurriness is insane now. I have to go right up on anything to read and I had 20/20 vision. I don't know if it's the MG progression or the medications. I ended up going to the family doctor who questioned why the Neuro didn't give me Mestonin, so he did. He only gave me a prescription for 60mg reg pills, twice a day. But after arguing with him for a few weeks and bringing the brochure on dosing to his office, I now have the 180mg extended twice a day and 60mg reg twice a day. The only relief I get from it is a slight improvement swallowing and talking. But I still have issues eating any solid food and if I talk a few minutes, I have problems... medicine or not.

Right now, I'm supposed to go back to this Neuro tomorrow, where I will bring in Prednisone dosing info for MG and hope he ups the dosage. I count each day until I can get to the specialist!!!

And as far as the gym, they froze my membership. I still pay, but they said they'd add the months back on at the end. But right now, I can barely lift 10lb dumbbells above my head. I have lost almost all of my strength and it's 24/7. None of my symptoms seem to get better during the day, they just get worse as I work too much. I have to learn how to relax and I have to learn how to rest. My entire life is turned upside down and I can't be running 1000 mph anymore, but as of now I am still working myself from about 5am to 6pm a night. I am self-employed and it's a lot of computer work, but also retail and moving boxes, etc. I would give ANYTHING to have normal vision again. The swallowing and vision are the issues that scare me the most.

I laughed out loud when your neuro said that he didn't want to give you any other meds due to their "side effects," but gave you steroids! Steroids have more side effects than most other drugs do and have the potential to cause diabetes, bone thinning, cancer . . . the list is long.

Most MG experts do not use Timespan during the day, only at night. When you're awake doing things, you might need to adjust dosing from 60 to 75 mg., just as an example.

You should NOT be mixing Timespan with other Mestinon. I know that there are some MG patients who do, but it's not recommended due to the possibility of a MG crisis. Overdosing on Mestinon can cause what's called a "cholinergic crisis," where you get too much acetylcholine.

A MG crisis is where you don't have enough acetylcholine, or what I call muscle gas.

I highly recommend finding a meditation expert to handle any anxiety (or OCD). It's amazing how that can center you and help with that. Of course, a good psychiatrist for an evaluation does help, too, as long as they don't think that drugs are the only answer!! ;)

And, frankly, I think that what you were doing on Google was like a dog with a scent. You knew something was wrong and you were on the hunt to figure it out! We all know what that feels like. AND you were right.

Always trust your instincts.

The only thing that really helps with double vision are steroids and other immunosuppressants, unfortunately. Mestinon is only a helper drug, to get your muscles more acetylcholine, and does not affect the underlying autoimmune mechanisms that are creating the antibodies that are attacking your neuromuscular junction/muscle receptors.

Please have a conversation with your primary doctor about steroids. Neuros these days only like to use them for patients in a crisis mode (which you might be in). But then they do a high dose of IV Solu-Medrol for a day and then follow up with tablets AND a taper schedule. Too many neuros have had MG patients who can't get off of Pred and have serious side effects.

Time to find someone else to handle boxes! Your MG is unstable right now. Basically, that means that you are on the verge of a MG crisis due to how weak you are. Until you get that under control and have that conversation with an expert, you HAVE TO take it easy and not push your body. Seriously, this is a potentially dangerous situation.

When breathing gets worse with MG, the pulse increases. That happens because the O2 usually goes down and the heart is pumping harder to get us oxygen.

I have on oximeter to track over time how my O2 is doing. Don't wear one all the time! ;) It can cause electromagnetic damage to your fingers/nails if you do that. But it's a useful tool to check how your O2 is when you are weaker. If it's 93% or below while sitting, it will be lower while sleeping. And you can't tell how low it will go. So, at that point, it's time to seek out more help in an ER, if you are also much weaker, can't swallow well OR breathe well. You don't have to have all of those things going on to need help, only one.

I think you have good instincts, but you do need a good neurologist. And a good pulmonologist. And please don't hesitate to go to an ER.

I put some PDFs below for you to look at.

You can get through this! Just listen to your body and take it easy!

Annie

=-/
 

The Neurologist I am seeing now is clueless. He basically didn't want to prescribe me any medications to let the MG specialist do it. The problem is I have been waiting weeks and weeks for the 1st appointment. I had to freak out to get the Mestonin increased and haven't bothered talking to this Neuro. I wasn't going to even bother going to my appointment tomorrow because if he doesn't increase the Prednisone dosage, I'd have wasted the $45 co-pay. I have great insurance, but co-pays suck. I do believe I've been on the verge or having a crisis, but I am stubborn and don't believe an ER can help me. I don't know where you live, but in the US it's for life and death. Just about stabilizing you and releasing you. I don't believe there's anything they could do for me. At this point, I've only been dealing with this for 3 months and I'm still in awe at how quickly it spread and how severe the symptoms are. My vision went from 20/20 to unable to see without an eye patches in several days. And now with the blurriness, it is horrible. Do you think the blurriness is the 20mg of Prednisone or the MG progressing? I actually feel like I will never see right again and never feel "normal" or remotely ok. But reading a lot of forums, I know people have it much worse. But then again, they've had it longer and how much more will mine spread and how much worse will these symptoms get? It's crazy not being able to move my tongue properly. Like WTF? At times, I laugh about this. My talking... not being able to spit... silly things I never thought I wouldn't be able to do.

JerzyBoy, Listen, there is a LOT an ER doctor can do for you! They can assess your O2 levels, arterial blood gases, and get you some O2. They can even check your breathing to see how well you are breathing in and out. They can hook you up to a breathing apparatus if necessary or refer you to a pulmonologist (who can also help you).

You are obviously not doing well. Don't be stubborn! Read the articles I listed, inform the ER doctor that MG is suspected, and tell them that you are scared! Or call the neuro's office for an earlier appt., which they will sometimes do if you call first thing in the morning.

I have been in an ER (in the US) more times than I care to even think about. Sure, sometimes they can be totally inept. But they can't discharge a patient who is having such trouble breathing or swallowing or moving without figuring out why AND treating them!!! To do so would open them up for a lawsuit (don't ever say that, because they'll just get defensive).

Steroids don't normally cause blurry vision! More than likely your MG needs more help. But I'm not a doctor, nor do I know what your medical situation is. So find one soon and get help!!!

I say all of that with kindness and support.

Annie

Thank you
 

I wanted to post a quick thank you for all of the advice I received.

From the time of my last post, I have been in the hospital, mainly the Intensive Care Unit. Needless to say, I have gone through hell. When I finally went into the emergency room, I was close to complete respiratory failure. Luckily, I was not below 1 in the one test which would have forced intubation (I was at 1.1) and I refused to allow them to do it. Due to my swallowing issues, I was not given any food or fluids by mouth for over 4 days and also refused the feeding tube down my nose. I was given IVIG over 5 days and my respiratory rates improved enough for me to finally be downgraded out of ICU and finally to be released. But I still feel like hell. I had a barium swallowing test which showed the weakness in the throat while swallowing, but they don't suspect any issues with the food going down to my lungs as long as I adhere to a soft diet and am careful, I shouldn't have more choking issues. I just need to take my time and stop eating when I am fatigued. The doctors upped my Prednisone to 40mg while there, but I'm already tapering back down to 25mg. They also greatly increased my Mestinon to 180mg time release twice a day and the 60mg Mestinon 4 x's a day, every 6 hours. I feel a lot better, but still far from "normal" and far from not being sore, stiff and scared. I had a CT scan performed and amazingly I do not have a Thymoma and in fact, my Thymus gland is of normal size. They are still suggesting I have it removed, claiming that due to my age, health besides MG, etc, I am the perfect patient that could benefit from having it removed. I'm petrified of the surgery, but considering how serious my symptoms have been in the relatively short amount of time I've had the MG, I think I am going to go through it. I currently have an appointment with a surgeon and since I don't have a Thymoma, it is not urgent, but I'm thinking to have it done early next year.
Has anyone had experiences with IVIG they'd like to share. The one I received is called Flebogamma and I received 36g a night for 5 nights. I believe most of my improvements have been from the Mestinon and the only scary change I've seen is that I had double vision, but over the past week, it has got much worse. Looking in the mirror last night, I noticed my left eyeball was dropped down and looking to the left as I was looking straight. When I cover my right eye, it goes right back to the middle. But soon as I have both opened, it drops again. In a way, I'm hoping it could be a good sign of changes that could eventually help be more normal. But my eyeballs were straight before, I just had double vision and they didn't move together properly, like I couldn't look all the way left, etc.
But I wanted to thank everyone for the advice to go to the ER. It was a horrifying experience I hope I don't have to go through again and hope NONE of you have to experience. So next time, when I start to experience breathing issues, I am rushing right to the ER as quickly as possible.

Been there twice almost the same as what you went through it sounds like in July. Yes very very scary. Good thing you are feeling better. It's a long road. I don't know what the bumps will be day to day.

I also had a clean CT but they didn't suggest thymus removal. I'm not sure if it's the Docs themselves or the what that makes such difference in the treatment decisions. You have to let me know what you decide

My double vision and droop on the right are so bad. I am ready to go back to the eye doc though and have another check. I think it's causing regular vision problems in both eyes.

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Thymus removal
 

I am meeting with the surgeon on Dec 14. With everything I've read, I am leaning towards having it removed. I'm scared to death of the surgery and skeptical and realistic about what it can help, but what choice do we have? Considering how bad my symptoms have been in the short amount of time, I think I need to do this sooner or later and hope for the best. I just wish my double vision wasn't worth now than when I went into the hospital, it's very frustrating.

Just from my experiences
 

I had to spend some time in Hospital for a course of plasmapharesis after nearly going into crisis, myself. That sort of 'resets' you to let the medications get to working.

One of the things you mention is that you have trouble breathing in certain positions. In talking with other people in the local MGFA group, it seems that almost all of us have CPAP machines. I know that before I was diagnosed, I had a couple times where I was choking pretty badly, and was able to use mine as a sort of emergency ventilator, so I could breathe. It was able to get air past the collapsed muscles in my neck and let me breathe. You might want to ask one of your Dr.s about this.

Thanks
 

Since I've been home, I have not had any breathing issues except the typical shortness of breath when running around a bit too much. At night, I am able to lay on my stomach and back, although I don't know if that will be a long term thing. Today was the best day I've had in weeks and weeks. Although my vision is still bad, with zero improvement, I am breathing good and today was the first day I didn't have any speaking issues. Even my friend said it's the best I have sounded since I got the MG. I am interested in the CPAP or something similar though, I snore and I was told that my oxygen levels weren't as good when I was sleeping while in the hospital. I wake up at times, so it's possible it is due to some breathing issues.

I thought the same with the CPAP. They sent me for sleep study. Unfortunately or furtunately depending on how you look, I wasn't having mg breathing issues at the time. They did find mild apnea but suggested a dental device to help rather than cpap. I see the dentist in dec. The sleep study also found restless legs. My doc ordered iron test as a result and found high iron. They are now looking at a liver biopsy possibly to determine what's going on.

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JerzyBoy, Sorry about your health issues. Just saw this thread tonight. I'll give you a little of my story. I am a 49 y.o Male and was diagnosed roughly 13 years ago. I too had to go to General Practitioner 3x's before they finally gave me a blood test, even though I told them I had a sister who had MG and my symptoms were classic MG. I then was told to see a nearby neurologist. The biggest mistake I made (regarding Dr's) is that this neurologist only had one other patient for MG, all he knew was to give prednisone and mestinon. After much too long, I switched to a different Dr where he concentrated on two diseases, MG and Lou Gehrigs Disease up in Hanover\Lebanon NH. (Dartmouth Hitchcock). At that point, he slowly weaned me off the prednisone. he had me do some IVIG (immunoglobin) along with a dose of solumedrol. Then switched me over to cellcept. (mycophenolate mofetil). That made my symptoms much better. However, I still had double vision and my eyes were permanently skewed due to weakness in muscles that never corrected themselves.

As to my other big mistake. I was not in good physical shape, I was overweight (obese). I didn't exercise, I didn't eat right, I drank too much soda and junk food. I took no supplements. After reading a lot of books. I started taking a lot of supplements (Borage Oil, Fish Oil, Flax Seed oil, Pantethine, Pantothenic acid, vitamins A,B complex,C, D3, E, ; etc etc Also, I started eating better (no junk food, low carbs), I started exercising more (gym 4-6x per week). Also, starting almost a year ago, I gave up 100% on diet coke. I feel great!!!, My symptoms are 99.9% gone. I had surgery to fix my eyes but the .1% i'm missing is I still have some slight weakness in my eyes for full rotation of motion of eyes. However, I have no other symptoms of MG and I feel better then I have in decades.

In short, Find another Dr one that will help you while you are at your worst and get you stabilized. Also, evaluate what you eat and drink and supplements you take. Eat healthier, drink healthier, take supplements (do your own research). Good luck to you.