Even though I am on 30 mg of prednisone and 60mg of mestinon every 6 hours through the night too, last night I started with problems swallowing and choking a lot. I even had trouble swallowing meds. I had been totally fine and stable. I don't understand. . .

Then this morning the choking was better but my throat felt thick, like the tube was big and all my swallows feel harder. And suddenly my legs crashed about an hour and a half before my noon dose of mestinon. Then when I took the dose, an hour later, my legs were STILL totally weak. The drug did not kick in. That had never happened, even since the first dose in the hospital.

So I called neuro. I got a new doc on the line who said it all sounded "classic MG" to him and he upped the pred to 40mg and the mestinon to 90mg and to call my doc tomorrow cuz he's on if it doesn't get better and to go to the ER and GET MY BLOOD CLEANED if it gets any worse even though I am sero-negative!

After all the this, it just seemed totally obvious to him and my doc had told me I was getting way ahead of myself when I mentioned plasmapheresis. But doesn't he mean that if the meds aren't working that this is the next step anyway?? Why is the other doc pushing me so much?

And now that I am totally unstable again and supposedly going off meds for Thursday's EMG/repetitive nerve stim. test I really need to have a talk with the doc about the reason and purpose of going through with this considering the safety issues.

Totally baffled, debra

Debra, Let me clarify things for you . . . MG trumps everything, especially tests.

MG can be fine on a certain regimen of drugs and then go downhill. It is not predictable and there is not an "algorithm" for predicting what it will do! You can go out on a Friday, get worse on Saturday and even worse by Sunday. I often get a 2nd day payback after I go out that is even worse than the day after.

Did you up your Pred to 40? Up your Mestinon to 90 mg? Do you feel that your symptoms are fluctuating from hour to hour instead of day to day? What I'm wondering is if the higher dose on Pred is making you temporarily worse. That would tend to be more of a consistent weakness but not necessarily. If you are getting worse off of Mestinon and better on it, it's probably the MG.

Some doctors are more cautious than others about doing plasmapheresis. It is invasive and you have to be watched carefully (fluid issues, etc.). But it can give doctors a clear idea of whether or not a patient has MG.

Antibodies can circulate or be "tissue bound." Just because you didn't have any antibodies show up does not mean you don't have them. There are, according to people like Dr. Vincent, the probability of many more MG antibodies which they have not determined yet.

You have to trust your instincts with MG, not a doctor's. No offense to doctors at all!!! Only you can tell if you are getting worse and need to seek out care right away. And sometimes a person can get weak so slowly that they don't notice it until they are at a crisis point.

I will say again that, even if you went off of all drugs today, the effects of them - especially Pred - would not be out of your system by Thursday. The more important issue is making sure you don't have another crisis. What you have gone through does sound like "classic MG."

I hope you will talk to your doctor and discuss all of this. If you get worse, please go in. Try not to do much of anything, sleep a lot (which really helps), don't stress out and stay cool. If that doesn't work, you need help!

Annie

Annie,

I have not gone off anything yet!!! I crashed while ON THE MEDS at 30mg pred and 60mg mestinon.

Upping the dose to 90mg at 1:30 pm did increase the strength in my legs a lot but they are not back to what they were before the crash. I guess it will take some time to get to steady state with the new dose.

So if the antibodies are bound for me in the tissue, should I ask for a muscle biospy and be done with this? What is the accuracy of that test?

Thanks for writing. I was just lying around resting anyway. I wasn't even doing a thing when it all just flipped on it's head.

What's a girl to do? Is there any understanding this?

debra

I have asked myself this same question. My MG has its ups and downs, some of it I can understand the cause and I adjust my activity, but sometimes I feel better or worse and I just don't understand why. I think you have to always be prepared for a bad day and just keep hoping for those good days. And keep learning about how MG effects you since we are all a little different.

I feel for you. I hope you are feeling better soon.

Debra, Have you done anything in the past week? Gone out? It's not as easy as do this, rest and get better.

I'm not sure I can come up with a good enough analogy for recovery time and MG. A boomerang? If you throw a boomerang (MG is the boomerang) a few feet, it will take a shorter amount of time to come back. If you could actually throw it from Australia to the U.S., it would look like an MG crisis recovery time. The worse MG gets, the harder it is to recover from. Or think of something that looses elasticity the more you "stretch" it. It will eventually snap.

You were very recently in the hospital. It is going to take you longer to recover than if you just went out and got groceries!

Hang in there. I hope your docs take really good care of you this week and that you get better.

Annie

Thanks for the support you guys : )

Wow, that is a long journey to healing and I have such a long way to go.

The only thing I have done is gone to doctor's appointments. Honestly, I am in the house all day resting. And I cannot even drive. I only go down the stairs one time in the morning and back up in the evening to sleep.

Last night, I was totally winded going up to bed. My legs are weak again this morning even on the higher dose of everything and there is still some choking. I am a complete mess. I am going to have to call neuro again. . .

debra

Neuro said to stay on the same higher dose of everything and go through with the repetitive NCS/EMG we had this morning on my face, neck, and shoulder. I was able to be off mestinon for about 16 hours but pred only 26 hours due to the swallowing/choking/breathing concerns. So it may come as no surprise when I tell you now that the test was normal. Is it wrong to say I am totally disappointed? I cannot believe I am still in this position.

We are only waiting for the LEMS antibody test now and the doc is referring me for an SFEMG in the meantime (we'll skip it if LEMS is +). I said a lot of people with a strong response to mestinon, an icepack test and a symptom list as long as mine don't have to go through with that I have heard and he said that he is not comfortable with the level of invasiveness of the treatments without more evidence of pathology. Also, I was given steroids and mestinon at the same time and so he feels the picture is more muddy in my case as to what is helping. It is true that I am doing okay off the mestinon (weak but functioning) and had MAJOR issues changing the pred at all.

What do you guys think about all this???

debra

Debra,

Sorry you are going through this. My initial response is to wait for the LEMS result then get a second opinion before any more tests.

But the better response is to ask you what your expectations are. You are already on pred and mestinon. Do you wish to pursue different course of treatment in addition to or instead of the pred/mestinon?

If the answer is yes, then I would re-request what I wished to pursue with my current neuro - and if that was still met with resistence, I would seek a second opinion (after the LEMS result but before another SFEMG).

It can be so frustrating (and tiring), but try not to let the stress get to you....far easier said than done, I know. Pls. let us know what happens.

Sue

Thank you Sue : )

I totally hear what you are saying and I think it is sound advice. I have never had an SFEMG before though just to be clear. . .and I think we are going to be pushing the going off the meds thing again which I don't even want to consider if I can't do it right this time.

I am not sure what my expectations are since I don't understand what the heck my body is doing. Am I getting better on pred and mestinon or just covering symptoms of a crisis? Is there a way to tell?

When I tried to reduce pred twice it was disasterous. So it seems like I may need a more intensive treatment like plasmapheresis or ivig from what I'm reading. . .is that right?

I have had 2 opinions in that I had the hospital doc and now a new outside neuro. does that count as a second opinion?

I know I should try to keep my chin up but I have been crying all afternoon. I just so much wanted an answer today. . .

debra

Debra,

A couple of things to consider:

Mestinon is not particularly dangerous - though one can overdose on it

Pred can cause all kinds of side effects if taken for a long period of time.

Immuran or Cellcept also have a bunch of side effects, but have the potential of putting MG into remission (usually used after a thymus resection). It takes many, many months of treatment and there are no guarentees it will effect remission.

If someone goes on Immuran or Cellcept, they may be weaned off pred gradually. (You must never, ever, decide to just stop taking pred).

IVIG and/or plasmapheresis are frequently done when someone is in or has had a crisis event. Some folks will do these treatments as maintenance (like monthly or bi-monthly etc.) and don't use any drugs. Some may still take Mestinon.

There are people who attain remission - but most work to discover the optimum combination of treatments that work for them. From what I can gather, there is no 'one size fits all' treatment for MG. Just a bunch of possibilities to be weighed for their advantages and disadvantages. But, unfortunately, no magic bullets.

We all look to find the 'perfect' medical partner to help us with the choices and pros / cons of specific treatment plans. And most of us here do a lot of searching for answers through sites like this and internet research so we can take an active part in understanding and deciding upon what we want.

Find your medical partner, ask questions, get copies of all your test results, teatment plans, etc as you go along. Most of us keep our own medical files. If you 'build as you go', you will always be able to seek another opinion easily.

One last thought - - give meds a fair chance before trying alternative options (assuming there is no crisis situation). The worst thing - at least for me - is the 'being patient' requirement with MG. I can't 'will' it to behave when it wants to be heard!!

Sue