Hi,
 

just wanted to say Hi,

wasn't sure how to introduce myself.

if I write about the entire four years or possibly much more, I have been dealing with this illness, it would be a book. ( I am actually in the process of trying to write one).

so I decided to just say the bottom line-

I have a rare form of myasthenic sydrome.

after a fairly long diagnostic process, multiple therapuetic trials, which can all be summarized in a few words- quite an ordeal, I believe I have learned to live with it, reasonably well.

I now have a pretty good team of physicians-pulmonoloigsts, rehab physician, occupational physician, endocrinologist and even a reasonable neurologist.

the md in my name is MD, but not neuro.

my motivation to join your group was to think together about ways in which we can improve the managment of MG patients, worldwide.

because I personally think that there is quite a lot to do....

alice

Hi Alice and welcome.

Its really a great place here, everyone is so supportive and welcoming.
look forward to seeing more of you around here
take care
Kate

Hi Alice and welcome!

Good to have you join us. I agree, alot can be done to improve the management of our disease. I live in a rural area and hardly nobody knows what to do with my disease.

It is great to have a doc on board, you can bring alot to the table here for us. Knowledge is power!

Here's a welcome hug!:hug:

JJ

Hi Alice!

And welcome. Look forward to learning more about and from your experiences with MG.

Sue

thank you
 

thank you all for your warm welcome,

I agree that knowledge is power, but many times patients know more then physicians, about their specific disease.

I personally have learned much more from other patients, and other health professionals then from physicians, regarding this illness.

and this has made me ask myself a lot of question about what is happening to modern medicine...

it is true though, that my medical background probably enabled me to have better access to the medical literature, and to various experts (physicians and scientists) around the world.

and I will be more then happy to share this knowledge with you.

but, my current neurologist is a very humble and caring physician, who honestly tells me- taking care of you is like sailing an uncharted sea, but I promise to be honest with you and do my best. and honestly tells me that he, as most neurologists, has very little understanding in respiratory problems, and is quite happy that I have others that take responsibility over that.

and after all I have been through, I could ask for no more, but would not be ready to settle for less.

alice

Hi, Alice. Welcome.

Can you say which myasthenic syndrome you have? Is it the congenital myasthenic syndromes you are referring to? I found out in 2006 that I've had myasthenia my entire life (due to photos, symptoms, misdiagnosed lazy eye, etc.). Anyway, I do have MG antibodies but due to a very long story of a doctoring mess, there isn't anyone to test to see if I have CMS too. There are only two places in the US that can do the specific testing for CMS.

There isn't as much they can do for the myasthenic syndromes.

Have you considered getting a pulmonologist? I have a very good one who helps me when needed and monitors me on a yearly basis. They're the ones who take care of the breathing issues if someone has a crisis anyway, not the neurologists.

I do think it may make some people uncomfortable to have a doctor here but you are a patient too! So if there's anything you need, just ask. I hope you are still able to practice medicine.

Can we improve the management of MG worldwide? Not until the diagnostic process of MG can be improved. And the mistreatment of patients, mainly women, by saying they are only depressed, anxious, have chronic fatigue or other labels to insinuate they are being hypochondriacs. Sorry but that's my honest and learned opinion.

Annie

Well said Annie....especially the last paragraph. I agree.:Good-Post:

JJ

wow, Annie, so much information, questions and criticism in one post.

I assume that you probably have the same problem that I do- you appear too "energetic" for this illness.

I am not sure I can respond to all of it at once, so I will start from the bottom.

yes, I agree with you, modern physicians tend to "stigmatize" patients. in a way it is very helpful, because it makes it more efficient, and modern physicians, as opposed to previous generations (and I am talking even 30 years ago), are expected to be efficient. if you have ready made boxes that you can put patients in, then you don't have to "waste" too much precious time. this is very much like any kind of rationing.

also, women's health has been very much neglected for generations. if you think about the word "hysteria" which is the synonym of being emotionally unstable and making a fuss of minor problems, or even the equivalent of conversive disorder, as coined by Freud, comes from the greek word -hystero-which means womb.

ischemic heart disease was considered until about a decade ago, to be a men's disease, and women were thought to be very rarely inflicted by it. we now know that the clinical presentations, and accuracy of diagnostic tests-such as the stress test, in woman are very different.
I myself once pretty much forced an arrogant cardiologist, who still ignored those studies, to take a patient with what I thouhgt were obvious anginal symptoms to the cath. lab. and needless to say, she was taken from there straight to the OR for an emergent bypass surgery.

modern medicine is a very powerful tool and like any powerful tool, can be used wisely to improve the life of people , but can also cause much harm, if not used in that way.

I was very fortunate to work with a wonderful physician in a philadelphia inner city hospital- he was a hematologist that took upon himslef to change the way patients with sickle cell disease were treated.
sickle cell disease is a disease of african americans, and some of them do belong to the lower classes of the society and are drug addicts, but most of them are'n't, but as a major manifestation of this illness is extremely painful crises, that can only be managed with opiates, they would come to the ER in the middle of the night asking for morphium and treated like drug addicts.

this wonderful physician, decided to dedicate some of his time, on a voluntary basis and opened an ambulatory clinic, where he would see them on a regular basis. and when they came to the ER they would have a letter from him, giving very clear orders regarding the medications they should recieve.
I can't say that all the residents changed their approach, but some did.
and no doubt that seeing the way it changed those people's life and their gratitude to him was more rewarding then anything he could have earned in his private clinic during that time.

so, yes, things can be changed, if one puts his/her mind to doing so. probably not in one day, but eventually...

and when you say-Not until the diagnostic process of MG can be improved.
I think it is the question of the egg and the hen, because maybe we, as educated patients, can do something about it, in a positive way.

alice

I'm sorry, Alice, I don't mean to be contrary - just being honest. To me, being a highly educated patient, it is not a chicken-egg issue. There are neurologists out there who are cruel. And I mean denying a patient testing cruel. Denying clinical results cruel. And in cases like that of Rach (sorry, but you're an easy case these days, Rach), they have been completely immoral. Her oxygen stats go so low but they accused her of holding her breath for an oximetry test.

And I've seen doctors say a patient is too educated and should leave the doctoring up to them and then say they aren't educated enough. Blaming patients for their lack of, or too much, education is dangerous. It is the JOB of the doctor to get it right. And to be nice about it all. My auto mechanic doesn't expect me to diagnose what's wrong with my car. I know, not the same thing. But it's not my JOB to be a doctor, nor do I want it to be my job!!! :eek:

Doctors do indeed have most, sometimes all, of the power in the patient-doctor relationship. If they decide to have a negative view of their patients, even if it isn't true, the patient is screwed. I've seen it happen over and over again.

So while we as patients have some say in our care, it is ultimately the doctor who "decides" what is going to be done. We can't order tests or write prescriptions, only they do. And once a prejudice is in place that effects the view of a doctor, good luck getting them to change it or admit they were wrong.

I've seen too much doctoring in the past few decades to ever put on rose-colored glasses again. Having said that, I have also had doctors who I've known for decades who are amazing. It's not the good doctors we need to be wary of or to warn patients about.

I'm not putting you personally down by saying this about your profession! Only those particular doctors who don't do right by their patients.

The bottom line here is that YOU need the best care you can and I'm glad you are getting it.

Annie

Annie,

maybe you are right and each of us has to take care of him/her self, and just accept that this is the way it is with this illness, but I still want to believe (and you may think that I am naive), that this can be changed, so that other patients will not have to go through this ordeal.

you are right, I am now recieiving excellent care, but in order to get there I had to fight for four years, and still there are days, when I call my pulmonologist and recieve very reasonable, practical and helpful advice, and I am truly surprised. or when my neurologist says- I have never seen something like that, but not out of disbelief, but as a fact, that I ask myself when is he going to say that this is "impossible".

I do not think that any thing that happened to me was out of cruelty. I think it was a combination of lack of knowledge, missconceptions, over reliance on
diagnostic tests, laziness of thought, fragmenatation, arrogance, etc.

I can tell you, for example, that pulmonologist that do not have a good understanding of neuromuscular disorders, and infer from what they know about asthma and COPD (which are obviously much more common) can make serious judgement and managment errors. and also a lot of them have very little true understanding of non-invasive ventilation, and this is something I have learned the hard way.

alice.

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

Hi Alice!
 

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

You are really going to love it here!:D

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

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

Can't wait to hear from you!

Big hugs!
Erin:hug:

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

thanks,
 

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

Hi Alice!
 

Hello again!:hug:

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!:D

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!:D

Big hugs!
Erin:hug:

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

Hi Alice!
 

names don't matter
 

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

to Annie,
 

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!

thanks,

sorry to hear about the relapse of your illness, and hope it is better controled now.


and indeed we are all in the same boat.

and should do our best that it doesn't sink.

:Sinking:

alice

Welcome, Alice!

I'm sorry that you have MG, but am happy that you have found our group! We have a pretty good dynamic here, and having a doctor amongst us certainly makes that dynamic even more rich; I'm sorry that it's under these circumstances, though...

What are the main areas of weakness that you experience?

Just out of curiousity, have you ever heard of Manganese being a good treatment for MG? I've read many things about it being used in the past to treat MG, but my neurologists do not seem to be aware of this...I'm wondering if you've come across anything reliable that shows that certain supplements might be at least helpful....

Talk to you soon!:)
Nicky

Hi Nick,

I haven't heard of it. but would be glad to know if you have any information on that.

calcium and magnesium are essential for proper muscle contraction, so too much or too little of them can cause problems, but I am not aware of the role of manganse in that.

as to your qustion regarding my symptoms, I basically have involvement of every muscle group, which varies in severity. my fluctations are much more extreme then what MG patients usually have. and that has preplexed quite a few physicians. (including myself).
I guess the most troublesome is my respiratory msucles, because you can do OK even if you are unable to walk, but not so if you are unable to breath.
as long as I have my respirator with me, I am fine, but it becomes a problem every few months, when it needs to be readjusted, and then even with it, I feel that I can hardly breath, and need to see my pulmonologist ASAP.

I am really glad that I have found the way to still be able lead a reasonably productive life, and not give up all of my personal and professional dreams (although obviously had to put aside some of them).

and am quite hopeful that at some point they will gain a better understanding of those unusual and rare myasthenic sydromes, like mine, and I will be able to run!!! (like my neuro promised me I would after my first IVIG).

so possibly 20 years from now, when all my friends will start complaining of not being able to do what they did before, I will be the exact opposite!

alice

Manganese has been mentioned in the alternative medicine websites in regards to MG.
This is an example:
http://www.digitalnaturopath.com/cond/C491841.html

However, there are no papers specifically about this on PubMed.

The manganese connection is similar to the connection of zinc and selenium in the conversion of inactive T4 to T3 (thyroid).

However, self medication without testing of some sort, is not safe IMO. Excess manganese consumption is implicated in Parkinson's.
http://www.sciencedaily.com/releases...0201141559.htm

Manganese is pretty plentiful in vegetables. In fact vegetarians often get more than most others.
http://www.nutritiondata.com/facts/l...roducts/4313/2
This website is a very good resource to see what you are really getting in your food. This link shows 27% of manganese from one serving of canned pinto beans, for example.

Manganese has come up in relation to other neuro problems. I can recall posts about it on Tourette's in the past.
This is an interesting link:
http://www.ithyroid.com/manganese.htm
There have been studies showing elevated manganese levels in violent felons.

And manganese is often found in osteoporosis supplements.

When dealing with trace elements one has to be very careful.
I would not supplement with this mineral without testing and supervision.

Alice,
Great to have you on this forum and I wanted to welcome you here! I agree that we are all in the same boat and we shall right this ship one day, hopefully soon! I appreciate your input here, but feel free to also express your venting here, as you have those days just like the rest of us and need someone to vent to. We all have our "days" and you are no exception, so express yourself freely and no one will think anything different of you for it! As most of us have found, many of us even have family who do not understand what our life is like, but I have found I can come to this forum and vent and have friends here who understand. Again, welcome and thanks for your inputs.
Hugs,
Simon

Hey Simon!

Glad you feel well enough to post. Has the IVIG helped? Hope you're getting stronger and stronger. Cool front almost taken ahold. It will be WonDerFul!!! Should be a fantastic weekend....yippee!!!
Sue

Thanks simon,

of course I have my bad times, just like any one else,

and this illness is very hard to explain and understand, so obviously there are times when those around you, or even you don't understand what is happening.

and if you have a relatively unusual variant of this illness and/or have less knowledgable/open-minded physicians, or a combination of both, then they don't either.

if someone tells me they never have times of fear, dissapointment, despair etc. then I would think something is really wrong with them. how can you always be stoic about this?

the first time, I collapsed and found myself in a hospital bed, instead of at a hospital bed, and the neurologist that saw me, thought I had a pretty severe illness, pretty much "out of the blue sky" , I was quite overwhelmed and started crying. the nurse that saw me, who has known me very well from years of working toghether, was very surprised to see a physician crying and did not hide that. so I said to her, how could I be able to understand and accept my patient's normal responses to their suffering, if I don't accept my own?

and then when one of the neurologists that took care of me initially, who was also a good friend and colleague, when he saw me very sad, after my illness returned abruptly within a week, after a seeming "remission" , told me that he "can't see me like that" and suggested that I take antidepressants. so I told him that if it is so hard for him to see me like that, maybe he should take them.

it's just that I have been dealing with all this for more then 4 years,
have gradually learned how to live with it.
and am managing to have a pretty good life, despite fairly severe limitations that I have learned to bypass, overcome in various ways.

it was a lot of hard work, trial and error, excellent medical care, and quite the opposite as well, many times by the same physicians. a lot of hopes and shattered hopes, and then new hopes...victories and defeats....

finding those that can help, and avoiding those that mostly do more harm...even if it is out of the best intentions.

and mostly, trusting myself.

alice

Simon
 

Hey Simon,

Good to hear from you! We miss you around here. Hope you are feeling stronger. Take care.;)

Big Hugs,
Pat

Alice,
Thanks for the reply. Glad you are able to cope with your situation in the most positive way possible. I understand about great neuro's and others who might not be as much help. I am blessed with a great neuro and am thankful and also a great primary care physician. Keep on keeping on and we shall endure!
Hugs,
Simon