Alice ~ nice to have you as part of our group. This group of individuals are so wise, caring and supportive that every day is just a little brighter because of them! Can't wait to hear more of your thoughts on ALL the many issues that we must deal with. Take care ~ Melanie

Hello and welcome to the BEST site on the net for MG!

You are really going to love it here!

I have been dx'ed with acute MG, but feel truly blessed to have such an amazing neuro - he is brilliant, warm and caring!

I think it is wonderful that you are writing a book - there is so much to learn about MG!

Can't wait to hear from you!

Big hugs!
Erin

Hi Alice,

Welcome to the group! Everyone here is very helpful and supportive. Looking forward to hearing more of your story. Take care.

Hugs,
Pat

you are a very nice and supportive group,

and I hope I can contribute something,

and erin, it is great that you have such a supportive neruologist,

I assume that when you say acute MG, you mean acute exacerbation, which can be managed with proper treatment, and should hopefully just be a small drawback in your way to remission.

MG is unfortunately not an acute illness, but a chronic one, and I may be wrong, but from what I have seen, I believe that even those that acheive remission, still have it to some extent, but many can overall live a near normal life with it.



alice

Hello again!

I really find it reassuring that we now have a REAL Dr. on our site! What a coup!

I hope you are right about the dx! All I know is that my chart "fell" open and my dx was "acute MG w/o exacerbation" - looked it up and was really scared! Again, I have an amazing Dr. who takes great care of me and even meets me @ the ER when I need to go in and is always available for me!

I have been truly blessed and lucky! I also KNOW that no matter what my chart says, there is always a chance for remission - always! I NEVER, EVER lose sight of that!

Big hugs!
Erin

Erin,

Your doc. sounds like a great guy, why don't you check it with him?

residents can sometimes be very sloppy in what they write in patient's charts.


in Osserman's time, before there was any effective immunosupressive treatment or good respiratory support options, there was a relatively rare entitiy of actue fulminant MG.

but, since then medicine has fortunatley made significant advances.

and any how, you don't sound any where near that...

and I am quite sure that with time, you and your doc, will find the best way to manage your illness.

and I think it is important that he knows about your fears and concerns.

alice

Hello again!

It was my neuro's dx - I recognize that handwriting ANYWHERE! LOL!

I was very, very sick before I was dx'ed - in fact, MG almost took my life. I had several occasions where I was unable to breathe - after 8 days in the ICU, I was a NEW woman!

I did ask Dr. I about the dx and he was (for once) very PC about the whole thing - he did acknowledge that I have so called "acute" MG, but urged me to keep focusing on remission. I truly love that man!

I have been on between 80 and 40 pred for over a yr now with 2000 mgs of cellcept added. Needless to say, it has wreaked h&ll on my body! I am waaaaay overweight and just felt miserable, so he took me all the way down to 20 mgs of pred (said @ this point it was hurting my body more than it was helping) with 3 days of IV IG thrown in for good measure. It is great to have the power port - all of my veins were collapsing......plus to be quite frank, I loathe blood work - I used to look like a pin cushion or junkie but now they access my port and I am good to go.

Again, regardless of my dx - I KNOW that I am going to go into REMISSION! I had my thymus removed 17 months ago and am doing everything possible in order to achieve that goal!

I have fought too hard and too long to give up now! I have also found that a positive attitude makes all the difference!

How are YOU feeling?

Big hugs!
Erin

now I understand better.

but it is really a matter of semantics, or like in the words of Shakepeare- "what's in a name, that which we call a rose, would any other name smell as sweet"

I think that what your neuro is saying is - "you have a serious illlness, that could have been fatal 60 years ago, and that is why you need agressive treatment and can't just be left to take mestinon, but I am quite sure that with proper treatment we will be able to control this illness very well."

some physicians find it very hard to discuss those kind of things with their patients. I don't, I always say the truth, and always tell them that we are going to fight this together, just like your neuro does with you.

I think that the vast majority of patients want to know the truth and are capable dealing with it, and if you don't say clear things then it just raises more anxiety.

as I have said in another post- if you have to fight a dragon, it is better doing it with your eyes wide open and not blind-folded.

but, quite a lot of physicians (even truly excellent ones) don't share my oppinion and think they should "protect" their patient and make it pinker then it really is. I personally think this is just very confusing, and also leaves the patient alone with those concerns and fears.

I am not afraid of any human emtion and nothing is a "taboo" for me, if it's a topic my patient feels he/she wants to discuss. but that's me.

I had an excellent mentor who taught me that, the same hematologist I told about previously. he would always talk with his patients at eye level and tell them everything, even if it was very hard. he would tell me that he doesn't feel he has the right to decide for them that they should not know the truth.

and one thing that I never take away from my patients and try to give plenty of is hope, and I think there is always hope, as long as you are ready to find it.

and your overall good response to the treatment you are recieiving does sound very encouraging, and probably that is why your neuro is so optimistic and happy to keep on fighting with you, and prefers to talk about the good and not the bad things.

and even if you don't go into full remission, I am sure that you will find the way to live with this illlness, so it will not disrupt your life as much.

I am not sure if my own course will be encouraging for you or not, but as my current neuro said, I am probably one in a few million, so I don't think you should infer too much from that. and I don't have all the positive antibody tests, EMGs etc. that you do.

what I can tell you is that I work as a physician (albeit part time) continue with my clinical and academic work, despite this illness, and am very far from remission.

like you I was not and am not ready to give, up, but at some point I realized that what I should be fighting for is my productive life, with or without remission, which may or may not happen as it is really not up to me.

when I told my rehab physician that I am planning to go back to work, he asked me how exactly do I think I can do that, when I am not able to walk even a few meters, and intermitently require a respirator. so I asked him, what about steven hawking, can he walk more? and from that moment on, he became my partner and helped me do everthing in order to ahchieve that goal.

and honestly I don't think it is realstic to always have a positive approach, and never think about all the things you have lost, or never get frustrated when something that should be done easily is like "climbing the everest" for you. even though ll it's great to find the way to "climb that everest", and get to do what you need and want.
even completely healthy people, who can do everthing sometimes have moments of despair, so why can't we?

alice

Annie,

I still "owe" you some answers to your questions, I was not trying to avoid them but was just "overwhelmed" by so much at one time.

you have asked-Can you say which myasthenic syndrome you have?

the truth is that neither I nor any one else probably can, with the current knowledge in neurology. I have clear and "objective" evidence for a myasthenic syndrome, but it is very hard to know what exactly is causing it. (it is thought by my more inteligent physicians, at this point, that it is probably a combination of some rare genetic problem with a not less rare antibody, that they could only detect using a very sophiticated method, and may theoretically be a "false positive").

at this point I am don't care that much about the exact name, but concentrate on recieving proper managment despite the "sin" of having an illness that does not fit any known "box".

if you are interested in all the details, my own thoughts on the matter, or think it may be helpful for you in some way, I will be glad to give them to you, but otherwise they don't really matter.



as to your other question-

I may be wrong but, don't think I would be alive by now if it weren't for my pulmonologists. and I have had quite a few over the years. as my illness progressed, I required "new" expertises. and now I have one, that has a very good understanding in neuromuscular disease and non-invasive ventilation, and is also a wonderful guy who is completely honest with me about what he does and what he doesn't know, and is ready to think with me, about what can be done.

and yes, I am able to practice medicine, and in a way I think that my own experience has made me a better physician. (although much less effficient, no doubt). I feel very lucky that I can do that, and hope I will continue to be able to do so for many more years.


and last but not least, I hope I don't make you or any one else uncomfortable due to my profession or any other reason, and if I do please let me know, and I will do my best not to.

alice

I believe that even those that acheive remission, still have it to some extent, but many can overall live a near normal life with it.


Alice, Very true indeed as I had been in a drug free remission for 17 years {but still had some vision problems} My pulmonologist is the one who sent me to my Neuro because he said "he" couldn't help me with my breathing because he felt it was more MG related {turns out I was having bad reaction to inhalers} So my Neuro is more my primary Dr, thankfully he listens and is very supportive.

I am glad you joined the site and I hope you, as a patient find the kind of support you need here. We are all in the same boat no matter what title we have or don't have beside our name.

There are many times we just need to "vent" or ask questions that we feel are silly but turns out we all have the same problem..LOL

So a great big welcome to you!