Yes, Alice, it does make sense. And you are making a difference.

I think the issue (though not one that can be readily remedied) is that if you - with all of your creditials and contacts - have some challenges with some folks in the medical community.....just imagine what us poor 'dorks' who have NO credentials go through!!

And if we 'dorks' educate ourselves too much - or push for open disscussion - too many docs shut down. Some (I think) due to power tripping...and others because that have too many patients in the waiting room yet to be processed!

Now there are many exceptions (and you are certainly one), and they are rare finds to be kept and cherished!! But, on average, it is difficult to find medical professionals who want, or have the time, to actually allow the patient to partner with them in the dx or course of treatment.

What do others think?

Sue

Hi Alice,
Wow you've hit directly at the problems that I'm having. I have spent the last few days unable to function, hands weak, breathing difficult, lying in bed hooked up to my CPAP. And all the time agonizing (and trying not to agonize) because my neuro says I have a mild case of mg! I ask myself: am I going to lose my house, be unable to work, unable to have the means to raise my children because I can't get proper treatment? Why is it that I can't get the docs to understand how sick I am?

There are some things I can put my finger on. One is that the neuros I've seen completely discount (don't even hear) any symtpoms that do not occur right in front of them. I can't call them and say, ok it's happening can you come over and see for yourself? Videos and pictures don't even seem to have much impact. It does seem to me that if a physician is unwilling to believe any symptom that doesn't occur right in front of their face that they are tossing out the biggest part of their tool case. That is especially true for diseases like mg.

When I first looked into this disease I was struck by how different the clinical description was versus the day-to-day descriptions of people on forums who were living with the disease. It seems to me that the information is flowing in the wrong direction. There's a checklist that the neuro goes through which isn't really accurate and anything that doesn't fit is discounted. For instance, when the last neuro gave me an exam he asked me to hold my arms out. I explained to him that my real weakness was in my triceps. He flipped me a fake smile and went on. He never did test the strength in my triceps. He later told me that I have a mild case because I could hold my arms up. Also, because my worst weakness is in my lungs and they can't test for that, it's dismissed. Well, it's completely debilitating and has ruined my life. Can't anybody hear me?

Since I have positive antibodies, I have been struck by the fact that the docs still want to treat my disease as if it's a syndrome. The quick 5 minute exams I get seem very much like the trigger point fibromyalgia exams. And because I can pass the neuro exam, I'm told I don't have mg or I have a mild case. That's great except that I do have mg. Why not start from the assumption that I have the disease based on the antibodies. It seems the attitude should be, we know she has the antibodies, we know (or should know) she's very sick. How is this manifesting in her? Well, I can't breathe, my facial muscles are so weak at times it looks like I've had a severe stroke, I can struggle at times with weak arms and weak hands, I twitch I have severe fatigued becasue I can't breathe and my heart works too hard. I don't know, maybe it's the researcher in me but wouldn't that be a more interesting and illuminating way to look at this? Why does the medical community look at this as a syndrome with a quick checklist instead of a dynamic disease that can vary widely from person to person and within person from day to day? Why was the book on mg written so long ago and nobody is allowed to add anything to the clinical picture? Why don't the doctors pay attention to what's really happening with their patients?

Okay, one other gripe (sorry). Those stupid pulmonary tests!! Why give a test when, if the result is abnormal, the docs are just going to blame it on patient lack of effort (a thinly veiled "crazy person trying to cheat" in my opinion). And worse, why is it based on the average of a normal curve? Is it just me or does this not make any sense at all. When I was on mestinon my normal was 118% of "normal" for the FVC and 124% for the PEF. That means that to show even mild abnormality I would have to be down in the low to mid 60% of my normal. Well, I don't know what the standard deviation is on the normal curve they're basing their results on but unless it's very low and I am an extreme outlier it doesn't seem like a very logical way to test pulmonary function .

Anyway, sorry to go on. You just hit a nerve with me. The problems you describe are literally ruining my life. But it's nice to see them articulated. So, maybe it's not just me agonizing over this every day.

Ally

Hello all,
15 months into MG (generalized no Thymus involvement)
I have read every post on this forum, constantly gleaning information. Thanks to each of you for sharing your life. I will be book marking this thread regarding this particular topic for next Nuro appointment.

I work many hours each week (need - not choice) with only one day off . Not much time to pop in reply, or share on my particular aspects and frustrations of this perplexing disease.

Always late, hurry up has departed from me. (eat applesauce swallow pill)
Aggravations flourish as I drop about 20 things a day, (eat applesauce swallow pill) my body is so out of control with my brain (eat applesauce swallow pill). I get so fatigued (eat applesauce swallow pill) I can’t think accurately(eat applesauce swallow pill). I feel bewildered concerning common tasks (eat applesauce swallow pill) and discussions (don’t forget the applesauce… you’ll be sorry). I avoid parts of life that were once pleasurable.

Often when I arrive home at night I put my head in the freezer for a few minutes (think breathing) to feel well enough to ascend the stairs for sweet sleep. When I get into bed my body is agitated, sleep eludes until a time of decompressing mind, soul and flesh.

Oh guess what? I am depressed. All the coping mechanisms needed to get through a blooming day, leaves me quite perplexed. Yet… NO ONE seems to NOTICE….and actually I’m thankful no one notices!!

My doctor did not want “to go there” when I asked for anti depressive meds. I will be changing doctors. Next appt: not available until mid December. Hopefully new doctor will have a better understanding of MG symptoms. In the mean time I am (trying) doing all I can to eat healthy, take supplements and talk with a physiologist

………………….(quote from a book the physiologist recommend “ Is depression a Prozac a deficiency”)……
.
Knowing I’m my best advocate helps me to take responsibility of my care. I rely on God’s grace and acknowledge that I have much to be thankful for.

Its just hard to climb the stairs like a 10 year old and 4 hours later like a 80 year old. Its all very weird!!
Thanks again and blessings,
Christy

Christy,

I can relate so well to what you are saying. I too experience all of these things:

Always late, hurry up has departed from me. (eat applesauce swallow pill)
Aggravations flourish as I drop about 20 things a day, (eat applesauce swallow pill) my body is so out of control with my brain (eat applesauce swallow pill). I get so fatigued (eat applesauce swallow pill) I can’t think accurately(eat applesauce swallow pill). I feel bewildered concerning common tasks (eat applesauce swallow pill) and discussions

But if I tell a neurologist about dropping things (my fingers won't work very well), confusion, feeling bewildered with common tasks (well put!) I'm told those don't fit with an mg diagnosis. I went from having straight A's in my master's of math program to not being able to muddle through a recipe. I couldn't remember where I put my dishes away in my kitchen cabinets.

Here's my theory: I wasn't breathing well and was building up co2. Also, I had a roaring, undiagnosed case of sleep apnea caused by mg breathing problems which made me dumb as spit because I was suffocating through the night and probably causing all sorts of brain damage (I'm better now but will never be the brainiac that I was. I can do the math again though, thank god, I need to get a job!) . It's interesting that you seem to have a lot of breathing problems too. I think it's related and I think it's yet another undocumented problem with mg which because it doesn't make the narrow checklist of what a neuro believes are symptoms of mg than it's used to rule out mg instead of being supported.

I feel the same way about bone deep fatigue, twitching and some muscle pain. All of those things come up with some (but not all) patients with mg but are symptoms that are completely unrecognized by neuros.

Also, varying levels of muscle weakness. Muscles don't go from full strength to unable to lift on the first try with nothing in between. By the same token, I don't think mg turns on in a black and white manner either. Most of us can look back and say, yes, I think I had it before but it was milder then. There's just a lot more gray to this disease than any neuros will admit. Unfortunately, that leads me to feel that a person might have to hit the darkest black - death or being in the ICU on a respirator before they can get the help they need.

I really think that the mg clinical picture needs to be re-written!!! Somebody needs to do some research and really listen to what patients are experiencing.

Anyway, enough of the philosophy. YOU are suffering. Of course you're dealing with depression. If you feel trapped with little or no way out of a bad situation you're going to feel depressed. Ugh. Doesn't make it any easier though, does it? Isn't it strange that you can have so much difficulty, struggle so much and nobody notices? Even when I tell people they still can't see it. It's a strange and lonely place for you to be. And me to be.

It's just such a good thing we have this forum and one another to understand. What did people do before the internet? Just quietly go insane? Probably.

Ally

Hi Alice - I wanted to say hi and welcome to the forum. I've been reading the posts but was having a bad week last week (who knows why) and was too weak to post.

Christy - I know it's all so hard for us all, but I had to laugh at your paragraph about the pills and applesauce throughout the day. You said it so perfectly - exactly what I would say about myself if I could think of the right words! Or, how it's been for me while I was working full-time. I've recently had to quit my job and go on long-term disability, but I'm still trying to figure out how to space my days so I feel better. It's more difficult than it seems like it should be. Anyway, thanks for that post and saying it so well for us all.

You all know the thing that confused me for so long after I was diagnosed? Every "official" medical-type website I searched to try to find out more about MG said that with treatment people could lead "normal" lives. That never seemed to work for me and I thought I must be a freak or something and kept beating myself up about it. I thought it meant I was supposed to be able to continue life as usual except take a pill every few hours each day. I wonder how many people it really works like this for? I've met a lot more who don't fit this description than those who do. I think this kind of language in medical literature is very detrimental to patients. It's hard enough trying to figure out how to live with this without being made to feel that you should be able to live as you did pre-MG except for taking a pill.

Has anyone else ever noticed this language on websites?

and here I was thinking it was just me that wondered why my neuro can see how "well" I'm doing after I've been sitting waiting for 20 minutes and asked to walk 5 metres, the chicken dance once, and once with the flapping etc etc.
This is after he's asked how Iam and I give my reply, and then wow I do amazingly well jumping through his hoops.
I do admit yes I can do soooo much better than the first time I saw him, but my life is by no means rosy. Some days I can't drive because I'm to fatigued and brain weary, but this just does not seem to register, he says, well only go out for half a day!!!! So I nod and think oh why didn't I think of that, cos driving at all is bad for me today.

Anywho, I think I've ranted enough, sorry for that, Its been interesting reading everyone elses posts
Kate

Thank you all,

I am now more convinced then before, that it is not "me" but this illness, the way neurologists manage it, etc. and that it is really worthwhile to try and do something about it. for the benefits of all involved.

And I will be glad if we could all try and think of what and how can be done to change things. I have my own thoughts on the matter, but that is not enough-As nothing can be achieved by one person alone.

I think it is hard enough dealing with this illness, without this extra burden.

And when I do manage to discuss those issues with my colleagues, the answer I receive is-well, your "case" is so unusual that there is nothing to really learn from it. Other MG patients are different.

and I ask myself-do they really know their patients?

I have tried to pick up a few pertinent sentences from your posts, and see if I can comment on them. of course this is just my oppinion.


I really think that the mg clinical picture needs to be re-written!!! Somebody needs to do some research and really listen to what patients are experiencing.

In fact this has been done more then 60 years ago, by Osserman and when I read his paper for the first time, I was quite amazed to find out that most if not all of my "unexplained" symptoms were fully described there.

And if we 'dorks' educate ourselves too much - or push for open disscussion - too many docs shut down. Some (I think) due to power tripping...and others because that have too many patients in the waiting room yet to be processed!

I think it is mostly due to lack of time. I know this is a lame excuse, because if you want, you can find time, but then it leaves only a relatively small group of physicians that are ready to put that extra effort come at night to talk to a patient etc. think about it, an average psychologist that only has to address the emotional aspects has at least 45 minutes for the interview, whereas an average physician that has to get to know the patient, examine him/her, generate a differential diagnosis, think and order the proper tests, and then explain it all to the bewildered patient, has no more then 15 minutes in most parts of the world and at the most an hour in the best clinics in the USA.
In fact, most physicians are quite happy when there patients are active and educated participants in the therapeutic process, and would have probably enjoyed discussing it more in depth with them if they were given ample time. Physicians are expected by themselves and the society to be "super heroes". And they are not.

It does seem to me that if a physician is unwilling to believe any symptom that doesn't occur right in front of their face that they are tossing out the biggest part of their tool case. That is especially true for diseases like mg.

I fully agree with that, and I think most physicians would. We are all told in med. School that 85% of the diagnosis is based on the history of the illness, and the patient's narrative. But, I agree that for some reason, many of my colleagues think that they can get the entire picture within 5 minutes and don't need to listen more then that.

Also, because my worst weakness is in my lungs and they can't test for that, it's dismissed. Well, it's completely debilitating and has ruined my life. Can't anybody hear me?

This in my opinion is a major problem. For some reason or other, neurologists have a very limited understanding of respiratory medicine. (To the extent that I have to say is ridiculous at times), and the vast majority of pulmonologists know zilch about neuromuscular disease, and its specific manifestations. There are a few that truly understand both, and are excellent in managing the respiratory problems caused by neuromuscular disorders, significantly improving the quality of life of their patients. But most neurologists, pulmonologists and patients, are not even aware that such an expertise is required.

Wouldn't that be a more interesting and illuminating way to look at this? Why does the medical community look at this as a syndrome with a quick checklist instead of a dynamic disease that can vary widely from person to person and within person from day to day? Why was the book on mg written so long ago and nobody is allowed to add anything to the clinical picture? Why don't the doctors pay attention to what's really happening with their patients?

I believe that all the neurologist know this very well, they just find it hard to imagine how their patients are when they are not doing well. And if the patient doesn't insist too much, everyone seems to be happy with what is going on.

Those stupid pulmonary tests!! Why give a test when, if the result is abnormal, the docs are just going to blame it on patient lack of effort

Very similar tests are used to diagnose and monitor asthma. And it is very rare to think that a patient is not putting enough effort. The reason that this is being said in MG, is because as I said before, no one really understands the respiratory manifestations, so the tests just don't make sense. The automatic interpretation of the machine for one of my tests was "small airway disease". Because the way my flow-volume looked would 99/100 times fit this diagnosis. But, the rest of my tests obviously don't. Another test that I had showed clear evidence for a cardiomyopathy (which I don't have) as again it was interpreted in the wrong way. It was extremely abnormal, everything was 30% of expected, but the pulmonologist that did it (twice, because he did not "believe" the first test), said that maybe for some reason the results were "unreliable". and he is a really good friend of mine, and had no reason in the world not to trust me. he was just truly confused.

You all know the thing that confused me for so long after I was diagnosed? Every "official" medical-type website I searched to try to find out more about MG said that with treatment people could lead "normal" lives. That never seemed to work for me and I thought I must be a freak or something and kept beating myself up about it. I thought it meant I was supposed to be able to continue life as usual except take a pill every few hours each day. I wonder how many people it really works like this for? I've met a lot more who don't fit this description than those who do.

What is normal? It really depends on how you define it. I think that there are many healthy people that don't live a normal life.
Also, the way neurologists define the normal life of their patients is not necessarily what the patient perceives as normal.
My life is in many ways very abnormal, but in others it is as normal as can be.
I once met an MG patient who appeared quite well, and came to encourage me and tell me that remission is around the corner. He was very ill before and now he is doing great.
So, you are back to work and everything, I asked.
Work? no way, he said, I am on a full disability, and if I over-exert myself I really don't do well.
But, he was in "remission" and had a normal life, in his opinion.

quote from a book the physiologist recommend “ Is depression a Prozac a deficiency”)……

without offending anyone, I hope, I am sure that the drug companies that produce those I call "happiness in a bottle", are very happy with this book. I am not.

In fact the book I recommend is called- "the loss of sadness, how modern psychiatry transformed normal sorrow into depressive disorder"

It is completely normal to be sad and overwhelmed when your life has changed like that, and you have not yet found the way to rebalance it all.

You need help and support in finding the way to do that, and not another medication with all its short and long term side effects, addiction (that no one talks about), etc.

Alice