Your web site is all messed up cannot read full letter or reply!!!
Ad is interferring with the print!!!

You misunderstand the nature of our body. Think about skin cells -- they are continually being replaced even without injury. With injury they just regrow new skin, Muscle receptors are continuously being replaced in our normal lives. Some have replacement levels of only a day or so, others take longer -- weeks or maybe a month. However, except for those in our ears, the rest seem completely replaced, and the underlying deformation of the endplates where they reside, rebuilt to be normal. It jsut takes the removal the antibody attacks.

If you really are interested in the time for this to happen and the details check out this 2015 post I put here.
https://www.dailystrength.org/group/myasthenia-gravis/discussion/muscle-receptor-science-and-regeneration

Wow, Russ and Peter. Thanks for this thread. I had untreated generalized MG for over 20 years before being diagnosed. That some of the damaged nerve receptors are regenerated explains why after what I always called "an attack" where my arms are useless for a few days, I experience hot neuropathic pain and twitching before they become functional again. I am seronegative but positive on single fiber EMG and have been on CellCept (no Prednisone - my choice) for four months. Since I still recover functionality in my arms after an attack, things are looking positive for me. It also sounds as if my double vision will stabilize in the future so I might be able to get by with prisms and no eyepatch. We'll see, and I will be sure to report back on this after a year or two when the CellCept and the thymectomy I had a year ago have had time to take full effect.

OK read that and very interesting as well - nothing new there though. I'm certainly not medically trained but I still question your explanation/interpretation.

I appreciate that in healthy people their cells are continually replacing themselves - we're not healthy people?

At it simplest, you imply that everyone with MG will go into remission at some point?

Now, if by remission you mean that the majority of the adverse effects of MG are under control with the drugs taken - then fine, I'm with you all the way. I, too am in remission. I see the medication as having reduced the incidence of negative antibodies attacking the muscle junctions and whatever mestinon is taken as allowing my muscles to overcome the residual damage. This is not a cure however, we are still susceptible to bad things happening as a result of both the MG and possible side effects of the medication.

However, I believe that you are saying that remission is a complete absence of MG related drugs - 'we' have been cured!

What we do see is that MG is progressive in the early year(s) and that at its most basic means that more muscle junctions have been destroyed. If one is lucky, like you were, it will only affect the eyes.

Some people, very few indeed go into remission (no medication).

I'm open to learning new things and I realise, as hopefully, you do, that we all appreciate the good news over the bad. I don't believe my glass is half empty but it's not overflowing either.

You'll need to do much better to convince me that MG is reversible. Yours might be, mine certainly isn't.

Feelings vs medical research is not an argument I care to take on.

What a shame, I had expected more. The thread has potential albeit we are, somewhat, swimming in the dark..

Well I must say between Peter and Russell you've answered most of my questions about remission I'm glad you two had that discussion because it really eased my mind and answered the questions I had thank you guys give me a little bit of insight and the information you both posted has been both helpful as well I wish you'd continue your conversation because I thought it was getting pretty interested have a nice day

There was potential but, I'm not so sure that Russ likes to be questioned?

Peter, I am learning more and more that how one presents the question is usually more important than the question itself. Whenever things don't go particularly well in a discussion, I usually go back and think about how I might have phrased something better or approached it differently so as not to be off-putting. Admittedly sometimes it seems impossible, often due to cultural differences or personality styles. But I always try to keep in mind that the discussion and information is what is important -- not the individuals (including me) having the disagreement.

Russ, your posts have been invaluable to me. In addition to the information you generously provide, there been several times when your kindness in responding to me or someone else in need of support has made me smile with gratitude.
- Nan

It is correct that receptors do regenerate; some faster than others. But, also realize that we are talking muscle nerve receptors. When your muscles are comprimised as a result of MG, your muscles become weaker from lack of use. It is important that we exercise the muscles attacked by MG to get our strength back after the receptors regenerate.

I learned this after a long delayed hip surgery. My muscles hadn't been used properly for years, so after my hip replacement I wasn't magically fixed. I needed to go through a lot of physical therapy to strengthen these muscles.

@Nanosecond - you're right of course and I do try. However, I'm also conscious that at distance, you need to make the effort to be clear in what you say and use your words carefully. On a lighter note, I come from Lancashire and we are renowned for being blunt, some might say uncouth. Add that to a military background and the die is set, unfortunately.

I've not been slow in giving credit where it's due either and I too find much of what Russ has to say on this forum both supportive and commendable.

I could question what myguy1980 (above) has to say. At it's most basic, muscle weakness in MG is not, most definitely not, as a result of underuse. There again if one takes the sentence in its entirety and is prepared to accept that our muscle junctions have regenerated then fine - perhaps more of us need the services of a PT?

Still hunting and still with an open mind. The following are rather telling:

https://webmd-a.akamaihd.net/delivery/delivery/a8/69/a869a721-73a5-496c-8bf7-b94d139e2d4f/Osmosis_Myasthenia_gravis_1920_750k.mp4

The distinctive features in MG, particularly the fluctuating nature of a patient's strength, is attributed to the unique pathophysiology of impaired neuromuscular transmission. This pathophysiology produces a dynamic rather than a fixed disorder as a result of the relative ease by which NMJs repair.

How age impairs the response of the neuromuscular junction to nerve transection and repair
https://www.ncbi.nlm.nih.gov/pmc/articles/PMC2766619/

36% ( +- 14%) nerve regeneration in aged rats at 16 weeks after complete transection not the worst odds -- I'll take it :-). Sample size of n= 6 or n = 5 per age group was small, statistically speaking, but I imagine that the researchers were constrained by funding. Thanks for the link to this study, Peter.
- Nan

Thought this too, was telling - final paragraph by Russ

My summary: Our receptors turn over rapidly and so we are often only a few days or weeks away from normal function (with IVIG or PLEX or maybe high doses of prednisone). However, there can be a point where the endplates and receptors are too far gone for repair.

I'm not trying to prove a point here, I'm simply listening to my own experiences with MG and relating how I see things. Currently my own MG is at a slightly more serious level than just my eyes and whilst it is under control I do believe that some of my NMJ have been destroyed and will not return. I also think that I'm not alone and unfortunately this is our lot, it's not going to go away.

@ Peter or anyone else whos interested, I recently attended the MG conference in KC and was very impressed with information provided by the Neuromuscular Doctors who are performing clinical studies on ways to effectively treat MG. I suggest everyone who is interested to view these presentations when they become available. While some of the info was a little over my head (just a simple blue collar guy) I am fortunate to have a spouse who is an RN and is months away from starting her new career as a clinical research coordinator to clarify data. The clinical results do show that there is significant progress in the treatment of MG and new treatments are on the horizon.
Now my interpretation is that while the receptors can not be repaired they do in fact regenerate. Not because they are repairing themselves but due to natural process our body goes through regardless of whether we have MG or not.
My take away from conference is it is up to each of us to make our voice heard. Whether through signing up in the MG registry or finding a creative way to get our cause (cure) out to those who can help fund the research.

Because our disease is so rare all of us need to make our voices heard and help with the ongoing research. If we do not Big Pharma and Researchers will focus their resources on other research.

We need to show the numbers of us afflicted with MG.

One thing we can all do is sign up on the MG Registry. It is a lengthy process but if you want to be a part of the solution then here is something you can do about it. Print a blank copy of form first so you can consult your Dr. on various sections. If you don't know how to answer a question reach out for help.

I had never heard of the MG Registry before, Amigo. So thank you! It is something we can do to help the research along. Here is a link to the MG Registry:

http://www.mgregistry.org/becomeaparticipant