So, learned something from Dr Nicolle that didn't match what I'd found through various Internet research attempts by me; he filled in the gap quite nicely.

1. I will likely not go into full drug-free remission ever.
2. I am effectively in "Remission" as far as Neuro's measure remission for MG. My MG is very well controlled with a very low dose of Mestinon.
3. 95% of those with MG are on some kind of drug therapy for their lives. That leaves a very small number of people who land in drug-free remission.
4. Thymectomy for a thymoma is unlikely (it is not impossible that it will, just very unlikely) to result in full drug-free remission.
5. Thymectomy with no thymoma (but a hyperplastic thymus) is what they are talking about when they cite remission rates for Thymectomy.
6. The small number of those who have thymectomy for thymoma that go into remission do so because the thymus tissue surrounding the thymoma was hyperplastic.

While it was not the news I had wanted, it is a relief to have my expectations reset to where they are realistic.

Brian.

4. Thymectomy for a thymoma is unlikely (it is not impossible that it will, just very unlikely) to result in full drug-free remission.
5. Thymectomy with no thymoma (but a hyperplastic thymus) is what they are talking about when they cite remission rates for Thymectomy.
6. The small number of those who have thymectomy for thymoma that go into remission do so because the thymus tissue surrounding the thymoma was hyperplastic.

Hey Brian,

Since finding out about my thymoma, I've always been pretty certain that I would not go into a drug-free remission since everything I researched on the internet seemed to show the contrary. My neuro. told me that after 5-years, I might go into remission, and I was very surprised by this, and didn't frankly believe it. I thought they were just trying to give me some hope, or be nice...lol

I was not aware that if they thymus is hyperplastic while containing a thymoma that this could put a person into remission once both are removed. That really clarifies things for me, and makes a lot of sense. Mine was very hyperplastic when it was removed. This gives me a bit of hope, but I am still realistic in the sense that I may never get a 'true' drug-free remission. That's okay, as long as there is some medication that alleviates the symptoms.

This also explains why many people don't see any benefit after having a thymectomy as many don't have a hyperplastic thymus.

Thanks for the info.. It was very helpful!

Very good post. I had hyperplastic thymus, so I guess that explains why I went into remission the way I did. We all want relief anyway we can get it so mestinon is now my relief and I am OK with that. I hope everyone goes into remission one way or the other.

Hey Brennan,

So your thymus was not hyperplastic?

I never asked but my thymectomy was for a very large thymoma. I don't know if it was even tested for hyperplasticity to be honest.

first, I fully agree that having realistic expactations is a relief. being given false hope is just confusing and dissapointing and doesn't let you really deal with what you have to deal with. and its great to find someone that is ready to honestly discuss it with you and answer all your questions.

but I also have to admit that I am a bit confused by what you say-

I am effectively in "Remission" as far as Neuro's measure remission for MG.

are you in "remission", which I would think means no symtpoms or signs of the disease, or are you not?

and how do neuors measure remission? did he explain it to you?

alice

Sorry Alice,

I'm not a medical professional, my choice of words can often be off.

He did not explain how to measure it beyond minimal signs and symptoms that are completely controllable with low dose medication and are not interfering with your life. He may have simplified things for me as a way of resetting my expectation of remission and I may have misunderstood what he was saying about it.

I can reach over my head and get stuff down from the cupboard. I can walk as far as I want (when my lungs aren't misbehaving ) My head doesn't drop because my neck cannot hold it up. I don't have double-vision from not being able to hold my eyes in synch. etc. Right now, the only symptoms of the disease I show are a gravelly voice (left vocal chords are effected) some difficulty swallowing some foods (that were not a problem before I developed MG) and if I don't take my mestinon my speaking is effected at the end of the day (marble-mouth). The only limb function failure I had during the testing was the pectoral muscles controlling the left arm -- they weakened quickly under use.

I am glad to hear that you too think that your symptoms are generally under good control, and allow you to live a relatively normal life, although not fully in remission.

I agree with you that the exact terminology is much less important then the way you feel, and if you and your neurologist are basically in agreement, it doesn't really matter what you call it.

sorry to hear about your lung problems and hope this is taken care of as well. and that you are being followed by a good pulmonologist for that.

I should proabably explain why I was asking this question.

my own experience has been different. I was told by a neurologist that I was in remission, because my symptoms, signs and results of EMG, didn't fit what he would have expected it to be. so although I was intermitently respirator dependent due to reccurent episodes of acute respiratory failure (according to every pulmonologist that was involved in my care), I was "technically" in remission.

I did find another neurologist since then. But, am interested what defines "remission" for neurologists. Because my current neurologist who does not think I am any where near remission (talking about being given realistic expactations even if they are obviously not want you want to hear), told me that he can understand why others could think that I am.

my current neuro relies much more on the symptoms of the patient, and also checks what you can really do (not push my arm once etc.) and is not misslead by my very energetic appearance. even he told me that the first time he saw me he thought I was much less ill then I really am, because it takes a very small push to get me over the edge, but if you don't push me there, I seem fine ( I hope what I say makes sense to you), and he said that this is very unusual for MG patients.

he also made me understand for the first time that when I talk about the fluctations in my symptoms with other patients and we seem to be talking about the same thing, we are actually not, as my fluctations are much more extreme, and gradually progressive, which is not the usual case for MG patients.

and he could also understand why neurologists that saw both sides of the extreme but not how it actually happened ( like he did for the first time), would think that it is due to "emotional problems". (what I couldn't understand why not even one of them thought of examining me in the way that he did, but that is a different matter).

I have actually learned to "take advantage" of this feature of my illness (if you can't beat them, join them, right? ), by recognizing the very early signs of weakness and stopping right there. but, whenever I forget this, even for a short while and forget to be cautious I can easily go into a respiratory crisis within minutes (that is why I have to have my respirator with me at all times).

my rehab physician was actually quite ashtonished to see how easy it was for me to go into "crisis", when he tried to deliberately distract my attention, and made me talk and lift my arms up at the same time. he said to me-you have to plan every move that you do, hah? and I said yes, but I have learned to do it almost automatically, by now.

well, enough talking about me, just felt it was "unfair" to ask you all those questions without it being reciprocal.

thanks again for your answer and hope that you keep on doing well, and even better once your lung problems are taken care of as well.

best,

alice