I have a question. I still don't have a diagnosis after all this time, although I have something that seems very similar to MG. I respond to Mestinon, which I take every 3 hours during the day. I receive IVIG infusions every two weeks. I don't know why, but even with these treatments, I have been gradually doing worse over the past month or so. This week especially has been bad, and I've spent most of the days using the non-invasive ventilator, in bed. It's been very hard to breathe and walk. Tomorrow I have IVIG treatment, and I hope it will help.

Is there anybody else here who receives IVIG treatment? Do they still have periodic exacerbations? I wish sometimes that I could take some other medication to help keep things on a more even keel (maybe something like Cellcept?), but without a formal diagnosis, my doctor won't consider it. I am thankful to be getting the treatment I do receive, but periodically it seems like things go off-kilter like this, even with everything we are doing. I wish I knew how to fix it.

Thanks,
Erin

Erin, Sorry to hear that.

What has your activity level been like? How MG does is directly related to how much we do, no matter what medications we are on! And some people don't do as well on IVIG as plasma (vice versa). Creating the best treatment protocol takes time. If they aren't willing to counteract what is causing MG (via immunosuppression), how do they expect you to be better?

Are only your legs and chest wall muscles weak, or other areas? How hot is it right now in CA? Have you been outside in the sun?

When was the last time they checked your antibodies?

Do you sleep well? A lack of sleep can make MG worse. Do you tense up muscles while you are sitting? Are you talking a lot? Yeah, socializing is one of the activities that uses a bunch of muscles groups at once and can make MG much worse. Do you take naps during the day? You could see if that helps.

Whatever is going on should prompt you to see your neuro. A good clinical exam is invaluable.

The last thing you need is to end up in a crisis. Please seek out help right away.


Annie

Dear Annie,

My activity level the past week has included some days when I had to go out to do things (medical appointments, grocery store, etc.) It is a bit complicated as I have to go by bus. But then when I get home, I just rest. No, I haven't been interacting with other people or talking. I've just been quiet.

The weather here is warmer, but not truly hot. I think today was perhaps 75? This is about 10 degrees warmer than it was last week and I am feeling it, but it is not hot like it would be during summertime. I have not been out in the sun except for brief amounts of time. I am having increased weakness in my arms, eyelids, and eyes (more trouble with vision). Also more trouble with swallowing, but I have a feeding tube so I am using it almost exclusively this week.

The last time they checked my antibodies was in the autumn of 2016, so it wasn't that long ago.

I try hard to keep on a good sleep schedule. My sleep hasn't been quite as good, but I keep trying. I have been falling asleep during the day, so I guess in a way I am napping. I have been really tired.

I did try to contact my neurologist but there was no response last week. I will talk with the nurses tomorrow when I go for my IVIG treatment. I go both Monday and Tuesday. Maybe they'll have a suggestion. Hopefully the IVIG will help, or the nurses there can advise me. They're very good nurses.

Thanks so much for your help, Annie. I really appreciate it.

Take care,
Erin

Um, Erin, you HAVE been socializing! Medical appointments are very tiring. Speaking to anyone is technically socializing. And those bus trips . . . exhausting! How far do you have to walk home?!

What your MG can tolerate is obviously not much right now. You may have to reduce your activities—even washing dishes! I didn't realize that you had a feeding tube! You can't get the same level of nutrients from those. That could actually be adding to your overall weakness. Can you eat any food? There are nutritional drinks that are even better than tube food!

The weather doesn't have to be in the 80s for acetylcholinesterase to increase. I have problems with anything above 70. But that's me.

The nurses are not doctors. They can't prescribe. They can commiserate, but that's not helpful to your MG!

Naps are one of the first signs of MG. And one of the first signs of MG becoming worse. MGers have to get enough sleep. It's the same as a prescription.

Nothing else matters while you are getting worse. You have to reduce activities (even simple ones) and rest more. What is concerning is that you can become weaker so slowly that you don't recognize how bad off you are. That's dangerous. Don't kid yourself into thinking you're okay only because you have IVIG.

I hope you can work something out with your doctor. It isn't fun when MG is worse.


Annie

I've been trying to contact my doctors. It turns out my neurologist is out of the country for a couple of weeks. That's why I couldn't reach her! The awkward thing is that I can't just stroll into the ER and get help unless my doctors are on call, because I don't have a formal diagnosis. If my neurologist is available, and my other doctors are on call, they'll contact them and they'll make sure I get treatment.

I'm talking with my pulmonologist and trying to see if we can sort something out. I have a feeling I may need to go to the hospital, perhaps tomorrow, if he can find another local neurologist who would treat me. (Sigh.) My pulmonologist can treat the breathing issues, making sure that I have breathing support. However, he can't order additional IVIG treatments, which I suspect is what is needed. Meanwhile, I keep using the non-invasive ventilator at home and doing the best I can.

I don't really understand what is happening, and why things are worse now. Sometimes I know why I feel worse, or what happened, but this time it is a mystery. I wish there were more I could do to treat myself at home, rather than going to the hospital, but I don't know what else to do.

Best wishes to everyone out there who deals with MG, day in and day out. I send caring thoughts to you all.

Take care,
Erin

Erin, Those doctors cannot deny you care simply because your neuro is away. You need to have your neuro put in "standing orders" for you in the hospital. That will cut through any nonsense by the other doctors. It has to be in writing!

If you have a prescription, for example, and are in the hospital, will the hospital doctors deny you access to that prescription simply because your doctor is not there?!! No, that would be negligent. The IVIG is no different. It is a prescription. The other doctors have no legal right to deny you access to it when you need it.

But IVIG is a temporary fix to the autoimmune problem. Imuran, Cellcept, and other meds are more permanent fixes. They are a constant dose as opposed to a periodic treatment. Your MG may need a more consistent treatment.

Have they done a complete differential diagnostic process, ruling out other possibilities? What about other disease states, such as a thyroid issue? I'm sure you know that people with MG often have other AIs. And they can pop up at any time. That's why tracking new symptoms is so important.

If you are doing worse, you need to go in. This is silly doctoring—and dangerous. Since you are quite active, your MG is not having the rest it needs. Something has to give. Either you have more treatments or back off on activities. A BiPap or CPap won't help avoid a crisis.

When does your doctor return?

You may need a trip to a primary doctor to assess some basics. When was the last time you went in?

I hope you will get all of the figured out so that you can have a somewhat normal and stable life.


Annie

I just thought I'd post an update. I've been in the hospital the past two weeks, and I just got home this afternoon. I had IVIG treatment as usual Monday and Tuesday that initial week, but it felt as though I'd done nothing at well. I had zero improvement. I kept getting worse and worse. By Friday, I finally had to go to the ER. They started additional IVIG treatment, right in the ER, and we did two more days of IVIG after that. Usually IVIG has really helped me, but I had no response at all to the three additional days of treatment.

My regular neurologist was still out of the country, and the substituting neurologist thought I should have a spinal tap. I hadn't had one previously. So now I've done that. Then she thought I should try steroids, which made things worse instead of better. When my neurologist finally returned, I was an even bigger mess than when I arrived in the ER. We were trying to decide what to do, and we finally decided to try plasmapheresis, which we'd never done previously. Today was my last treatment. It was astonishing. With every treatment, I've increased in my ability to walk, talk, breathe, and move my arms. I can even hold up my eyelids better. My daily breathing tests went up miraculously! They are the best now that we have ever recorded! This may be temporary, but it is really quite amazing. I have no idea why I stopped responding to IVIG, but it would appear I'm having a far better response to plasma exchange than I did to IVIG. Now I get to see how long it lasts, although my doctors are imagining that I may need to return for other treatments later. For right now, I get to live my life (carefully, still taking Mestinon and living reasonably) and see how long the effects last. When I start slipping, I'll contact my doctors and we'll get the ball rolling so that we can do plasmapheresis again.

Take care,
Erin

Did your symptoms begin from the head down or from the legs up? Just wondering about Guillain-Barre.

I'm glad the plasma worked. It's so odd how some MGers do better on IVIG and others on plasma. I wish they'd figure out why so we wouldn't have to go through hoops to figure out what works best!

I hope you continue to improve!

Annie

Thanks. It's been about a week and a half since I was discharged from the hospital. I was doing so well, but my symptoms are coming back again, so I had to contact my neurologist last night. It looks like I'll be going back to the hospital to have some sort of port implanted, and then do additional plasmapheresis treament(s).

IVIG really helped me for about two years. I don't know why it stopped working.

It's been so long...I'm embarrassed to say that I am not 100% sure which symptoms I had first. I think I had problems with vision and breathing before my generalized weakness became so pronounced.

When I first came home from the hospital, it was amazing! I don't know if other people have this feeling, but when I walk, it feels as though my legs have concrete blocks on them. They feel so heavy and it is so hard to move them. For a number of days, they felt light, and it was so much easier to walk, as they did before I had symptoms. It was amazing! But now they are back to having that concrete feeling, and they are unpredictable. It is really hard to walk. I am having other symptoms also, but hopefully the treatment will help. Best wishes to everyone out there who has MG. Keep on keeping on!

Take care,
Erin

The plasma treatment supposedly only 'lasts' for a couple weeks, according to my neuro. It's used to give the meds a chance to start working.

When I went in to the hospital, I was a real mess. I even scared the staff that I was going to code when I choked trying to take pills the morning before my first treatment.

It was sort of 'wheeled in, skip out' situation. The Dr. started me on high dose of Prednisone, with Mestinon and starting on Imuran. That got me started back into 'real life', and was back at work in 2 weeks.

The only problem was the 90 pound weight gain from the Prednisone in 6 months.

Just my experience, YMMV.