I have been completely bedbound this week. I am generally bedridden, but my symptoms have been so much worse this week. I have Chronic Lyme Disease, and was just diagnosed with MG after telling my Lyme doc, who is a neuro, that I have been having choking problems. He ran the bloodwork for MG and I was positive. I would guess I've had it at least two years based on symptoms, but who knows. Could be between 2-3 years.

Anyway I had IVIG on Mon and Tues, which I get for small fiber neuropathy, another lovely disease I have. This was caused by Lyme disease and Bartonella, another tick borne disease. I believe the MG probably was too, as autoimmune diseases can be caused by long term bacterial infections.

Anyway, it's hard for me to know which symptoms are attributable to Lyme and which to MG, though some are very clear. Since I've had my IVIG this week, I cannot do anything. My hands don't work (except to type.) I can barely close them, they are too weak to hold anything, my whole body is extremely fatigued, I am too weak to be out of bed, I'm achey off and on, I sleep almost round the clock. If I get up I'm shaking I'm so weak.

Anyway I'm so used to attributing these kinds of symptoms to Lyme disease, I dont' know if they might be MG related. I have had periods like this regularly off and on over the years, sometimes lasting months. My Lyme doc took me off my antibiotics two months ago to see how I did and I am definitely worse without them. And it's not unusual at all for IVIG to kick my butt for the rest of the week. It doesn't always, but it can.

The thing is, after Day 2 of IVIG, I had a friend spending the night as she traveled home from a holiday trip. She kept me up until about 3 am talking and I was EXHAUSTED, not feeling well, but didn't want to say anything. I feel like that was part of what put me into this crash.

I guess what I'm wondering is if any of this is part of MG symptoms. I am so used to everything being "Lyme", that I am confused now as to what really isn't. I understand the choking, breathing problems, blurry vision, weak hands, weak arms and legs, talking issues are all MG. But the rest confuses me.

Oh and yesterday my vision reverted back to very blurry all day. I was so excited it had gotten better with the IVIG !!! Do these symptoms randomly come back to visit here and there when you aren't feeling welll? That scared me, is it here to stay? I was just getting used to the joy of sight again.

Thanks, I just have so many questions....hoping for some insight.

Tracy, Let me be very specific and clarify the difference for you.

You know that it is the MG when any weakness gets worse. Period. Lymes does not cause fatigable weakness. A neuropathy is nerve PAIN. Yes, nerve damage can affect muscles but it would not be a FATIGABLE change in your muscles unless you have a degenerative nerve disease process going on like MS. Even then, it would not FLUCTUATE from hour to hour or day to day. That is the MG.

So if you do something like stay up talking and you get weaker, it's MG.
If you do any repetitive or sustained activity and you get weaker, it's MG.
If rest makes you feel better, it's the MG.

Does that makes sense?

I am serious, you need to seek out some help. It doesn't matter if you are having IVIG. It may not be enough. An MG crisis will take you out really quickly. You have sounded like you are near one for some time now. I don't know if it's the newness of thinking about MG or denial that you have it or what but you have to take this seriously.

I'm not sure what is confusing you. MG can affect any of your 640 skeletal muscles. It can be as simple as doing a task and then getting weaker while doing it. Or it can be slightly more complicated, in that you can get even weaker a day or two after doing that activity. MG is NOT predictable.

The symptoms you are describing like the weak hands and the shaking is MG. I can't say 100% for certain because I'm not a doctor and don't know you! However, if those symptoms are "fatigable" and get better with rest, then it's MG.

I can't remember, but I hope you are taking sublingual methylcobalamin too for your small fiber neuropathy. It has been shown in studies to help heal those nerves. A 5 mg. tablet twice a day - or more - is a good idea. You can't get too much B12.

Tracy, you have to talk this over with an MG expert. Do you have an appt. coming up?

If you get so weak that you can't move well or can't keep your eyes open or can't breathe in OR out well, you have to dial 911. I'm not being overly cautious by telling you that. I've had a crisis. It can get so bad so quickly.

Most people don't regret going to the ER, especially if it keeps them from dying!

And whatever you do, don't drive yourself.

I hope you will get help and hope this info helped you out.

Annie

Thank you, Annie. I appreciate it. I haven't driven now in about 2 years except in emergencies. I think the thing is, I've been this way for a while. It's not new. I can look back and tell you last year, I raced to the ER once unable to breathe. I was diagnosed with bronchitis, even though the breathing treatments only seemed to make me worse. The inhalers they prescribed only made me worse. When they finally prescribed Prednisone I could breathe again. But I was sent home and just lived with it until they prescribed the Prednisone. I'm wondering if I knew I had MG, if they would have treated that differently. I've never felt closer in my life to not being able to breathe at all except for a couple weeks ago when I passed out at the lab. Again, this was days before my diagnosis and I just could not breathe.

So it's that my neuro called with the dx, asked me to get a swallow study which I've now done, and that was it. I need to make an appt to go see him. I've been living at this degree of debilitation for a really long time. But it has been getting progressively worse the last two years, and is at it's worst now.

Everything I know I've learned on the internet. All he gave me was the name of the disease. I'll get in to see him next week for sure. I wish this complete exhaustion would lift. I can barely hold my arm up or even type. Thankfully my breathing has been okay, because I haven't been talking. Talking seems to be directly related to my breathing going south. Well, it's been okay for the most part because I've been quiet, but if I start talking it starts to go downhill.

Tracy, What you are describing is being on the verge of an MG crisis. I mean right now.

That day in the lab, you should've dialed 911. With MG, there's no knowing if you could've stopped breathing.

Even if you've had MG for a long time and have been "dealing" with it - which is admirable - it can still "take you out!"

No MG expert would diagnose a patient with MG and leave it at that! Especially not when they've been progressively worse due to a lack of proper treatment. It's unethical.

Did he even mention Mestinon? He should've put you on a trial of that immediately.

You should be having breathing tests done to see how bad you are. You may not even know how bad you are since you've gotten to the place you are in fairly gradually. You know the "saying" that a slow burn will kill you but a quick burn will save you.

It doesn't matter if it's one set of muscles that is severe or a few or many. It's the severity that should prompt you to go to the ER. They can prescribe Mestinon too, you know!

This is the kind of lazy doctoring or "can't be bothered" doctoring that is utterly useless and makes me go nuts. You need help now. The best way to keep MG in good shape is to maintain an even state of muscle weakness/not muscle weakness. In other words, you don't want to keep going downhill or go up and down with weakness. It's harder to recover, and takes longer, from where you are right now than if you were doing relatively okay.

Don't hesitate to go in, day or night. I'm so sorry you are dealing with all of this and mainly on your own. Please take care of yourself.


Annie

Thank you, you are really a wealth of information. That day in the lab, they had so much trouble reviving me they called the Rapid Response Team. I was in a hospital and they rushed me to the ER. I got the MG diagnosis about 2 days later.

All my neuro doc knows is that I was having swallowing / choking issues. He doesn't even know the rest. I had no idea they were related, or anything other than Lyme related, until he called to say I had MG and I started to research. Then I saw I had all the advanced symptoms, and these probably were not all Lyme related. I have yet to even discuss them with him. I will call Monday and make an appt. He is two hours away and I've had so many appts and IVIG two days every other week...I have to get in to him though.

He knows some of the symptoms from his two years of treating me for Lyme disease, but they were always in the Lyme context. I thought the shortness of breath was a Babesia symptom ( another tick borne disease.) I've been to the ER multiple times very short of breath, not knowing I had MG, and they always treated it as rule out a heart attack. There was always some chest pain too.

I guess it's hard to know when to go to ER because I've lived off and on in this state for 3 years. But now much of it is worse. The arm and leg weakness is much worse. My vision is worse. The breathing is definitely way worse.

Right now, I can count to 11 with a deep breath. I have never gotten higher than 20 since I read about the test but the last two weeks, never higher than 15 and usually can't reach that.

So when you are overall exhausted, does it affect everything? Your breathing, etc? Is exhaustion what can put you into a crisis? I guess I just need to understand this. If I feel any worse today I will go to the ER...but can you tell me exactly why I am going? Is it the five days of not being able to ambulate alone, the severe weakness, what number should I be able to count to, etc?

I've had several times I've been very close to going because of my breathing but then I turned on my side and fell asleep and it settled down.

Thank you so much for your help. I hope it makes sense that I'm just confused, thinking I've been this way for years. But really I probably haven't, maybe my MG has worsened and before it was more Lyme disease. I just don't know. I know vision was not a problem like it is now, nor was choking. So I do think it's getting worse. I don't think breathing was bad like this, either...or the severity of the arm and leg weakness.

My suggestion is to quit thinking about it and go in. They can give you Mestinon, they can call your neuro, do oxygen saturation, arterial blood gases, monitor your heart, etc. It's very important that you do this. There'll be plenty of time to think on that hard gurney or when you get better.

A lack of oxygen adversely affects the heart, brain and kidneys and can cause damage.

When you roll over and go to sleep, you may be giving yourself some improvement but it's not enough at this point. Muscles get even weaker when you sleep and it's hard to know if you are hypoxemic while sleeping. Or if you'll stop breathing altogether.

Do you live alone? Is the hospital far away? Whatever you do, you can't drive there yourself. If your insurance covers ambulances, you really need to dial 911. They immediately put oxygen on you and check your vitals.

And going two hours to see a neuro right now is dangerous. He can help you over the phone.

Please go in. I would bet that if your neuro knew about this or you had a pulmonlogist, they would both tell you to go in. I hope you'll be okay.

Annie

Hi Tracy, Gosh you are in bad place. My eyes are so bad today along with the rest of me cause I just got a lot worse because a cavalier ENT 'bathed' my nose with local anesthetic. There is so much unknown with MG. That is one of the few things I know for sure about MG. I do think it will make a difference that you are diagnosed. You sound like you have gotten worse.

"I can look back and tell you last year, I raced to the ER once unable to breathe. I was diagnosed with bronchitis, even though the breathing treatments only seemed to make me worse. The inhalers they prescribed only made me worse. When they finally prescribed Prednisone I could breathe again. But I was sent home and just lived with it until they prescribed the Prednisone. I'm wondering if I knew I had MG, if they would have treated that differently."

I am very famliar with this statement. This is exactly why I drag my feet and have told my daughters I wont go to ER unless I am obviously not breathing. I do have to add that since the last 2 ER visits in 09 I have gotten Lifeline medalion so I can just push that I will get someone here. Everytime I have gone to ER 1) they dont test my breathing unless I ask. They assume if I can talk at all I am breathing fine. I get the 'in your head' look. 2) have gotten worse because of the trip only to go home and have to try to deal with that alone (once I was admitted but again not tested for breathing and ended up with a very stressful neuro visit by someone I had never seen).

I do think it will make a difference tho that you have a diagnosis and if I had that I would go sooner. It is just till that is on paper I am sunk. That is the Hell I live. You sound like you are in a bad decline. I know that place where your breathing seems OK but only cause you're not talking. I am there every day now. I just pray a more definitive test comes thru to help my treatment.

Annie59

Tracy, I just wrote you a more detailed message and my fingers lost it. But what I wanted to say is I know where you are at about the ER. They have consistantly made me worse and then sent me home. Just cause I can talk at all they dont believe my breathing is worse. And they wont do any brearthing tests unless I ask or a very painful blood gas which can be deciptive. It is rediculous and dangerous because activity makes me worse and if they dont make me better they could send me into a full blown crisis.

I do surely think it will make a difference that you are diagnosed. If I were I would be more likely to go. As for now my girls know I am far far less likely to go.

Annie59

Oh no Annie, so you don't have a positive test yet? And you sound like you are really advanced, too! Yes I was wondering exactly that, now that I know I have this, will the ER treat it differently?

Last year, when I couldnt' breathe, had I known I had MG then, would they have admitted me and taken it seriously, because looking back I think I was really so close to a crisis then I'm lucky to be alive!

My breathing seems to change by the hour. One hour I can only count to 8 or 9, then I rest and I can count to 15 an hour later. But again, I've done nothing but lie in bed and not talk.

IVIG gives me a "flu like" serum reaction sometimes. I woke up at 6 am today feeling so much better. I think I was definitely dealing with that reaction, but I also think that reaction was making the MG much worse. Which is odd, because I know IVIG is used to treat MG, even though I get it for something else. How odd that the side effects of IVIG can actually make your MG worse for the first few days????

I'm hoping that is all it was. Today I go out to my PCP so we'll see. It will be first activity at all in a week. Right now I can count to 12. Hopefully this outing won't set me back. If it does I promise to go to the ER.

Tracy, Which "Annie" were you commenting to? I want to clarify that I have a diagnosis (AnnieB3), while Annie59 has a "sort of" diagnosis but not a neuro to help her, which isn't really help!

What IVIG also does is to alter your fluid status. It could have altered your electrolyte balance as well and THAT is what might've made your MG worse. Any decrease or increase in things like calcium, potassium or magnesium can make muscle weakness worse.

The IVIG may not "kick in" for a few days for MG.

Yet another reason why you should have gone to the ER. They can check that.

You will get better treatment than Annie59 did in the ER because you have a diagnosis. Sad but true.

I hope you will get help. You really need it. Your primary doctor can prescribe Mestinon too.

Annie