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

Attached Files

	MGCrisisExtubation.pdf (73.1 KB, 3220 views)
	NMDiseaseCausingAcuteRespFailure.pdf (120.9 KB, 3169 views)
	NonInvasiveVentilation.pdf (76.9 KB, 3085 views)
	MGCrisisInfoDrugs.pdf (59.1 KB, 3135 views)
	MGCrisisInfoForER.pdf (60.4 KB, 3307 views)

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

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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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.

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.

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.