[alice md]

is in the eyes of the neurologist.

I may be wrong, but I have come to the conclussion, that as opposed to most of the medical problems I am familiar with (as a physician), where you have pretty clear criteria by which to assess the severity of an illness, this is not so in MG.

my own experience with this, really resembled the mad hatter's tea party, from alice in wonderland, more then any thing else.

I was told that I have severe MG, then mild MG (even "microscopic MG" by one), then life threatening MG (admitted to the ICU, with MG crisis) then mild MG again, then potentilly life-threatening MG, then mild, then severe, then mild, then....

interestingly, two different neuroloigsts, that saw me pretty much at the same time could say almost opposite things. one could say I am in remission and the other that I have at least moderate MG symptoms.

but, I thought it was something to do with me. possibly I somehow managed to coufuse them. or as my current neuro said to me - you are very decieving, because seeing you sitting and even talking, you appear so much less ill then you really are. well, I wasn't trying to decieve any one, just function in the best possible way that I can.

but, as I get to know other patients, it seems to me that I am not that unique, in that sense.

also, I never had this problem with pulmonologists. they may have difference in oppinion regarding the optimal managment, but they all pretty much agreed regarding the illness itself. they all thought I had significant respiratory muscle involvement, with episodes of acute respiratory failure, which require intermitent non-invasive respiratory support.

it is true there were times, when I chose not to believe what they (the pulmonologists) said and "preffered" the oppinion of the neuros, but that was my fault not theirs, mostly, they had no doubts about what they thought and said it very clearly to me (and also to the neuros), as well.

alice

[Joanmarie63]

I always rested before a Dr appt so when the Dr saw me I was "strong" so he said my MG was doing well, than one day the Dr was running late and I ran out of steam so by the time he got to me he was surprised at how weak I was, than he got upset and said "why didn't you show me this before" because I said, I time everything out so I have the strength to drive and come here and make it home, you threw me out of wack..LOL

MG is strange indeed as one moment we are beautiful and the next we are ragged.

[rach73]

I used to do the exact same thing as you Joanmarie, go to the Drs fully doped up on the mestinon after having rested for a few days. Only for them to never understand how ill or weak I actually am.

Now when I go I make sure that I do all the things (limited as that is) that I would normally do and sometimes I dont take the mestinon for a couple of days just to amplify the effect.

The other thing that gets my goat about this illness are the comments "but you dont look sick" or "you look really well" when inside you feel like curling up in a ball somewhere discreet and just dying!

However the thing is now I am starting to look sick! Is that a good thing? Who knows?

Oh and while we are here.....going to vent! have you noticed or maybe its just me. When Neuro's test your strength they do it once! This is a fatiguable illness so surely some common sense could be applied. Of course my strength can be fine if you do the test once, try getting me to do it 3 or 4 times! (big slap on forehead).

Anyway thats me done!
Love
Rach

[Joanmarie63]

Rach,

OMG yes! They test it once, "squeeze my fingers" "Don't let me push your leg down" and my favorite "look up" but just once..LOL, I always say after he is done.. check me now or follow me home and see what I can't do after I get there and he smiles and says "no, thats OK, I get the picture"

[rach73]

I actually had some medical students do a practice neurological exam on me. So I had the chicken wings, push back on my hand with your forehead, lift up your leg etc etc all done once.

I asked what are you assessing for they replied weakness. So I asked them "what about fatiguable weakness, how do you test for that?" They all just stood looking at me, even the consultant with me couldn't answer it. So I said "if the patient had MG, how could you prove their fatiguable weakness with those tests?"
The students answered "well we can't, they just determine strength"
So the consultant says "actually thats a good point".

Your not telling me that nobody thought of this before!!!!
Crazy. Yes somedays I can do one leg lift, but I couldn't do five. What part of fatiguable weakness don't they get!

Love
Rach

[AnnieB3]

Alice, This is probably the sticking point with MG, at least between me and some neurologists. This is something I wrote when I was ticked off at them for ignoring the obvious.

"I still think it’s funny when neuros say that your MG is mild; like it’s an inert gas. Of course it’s going to be mild just sitting there – inert – in a doctor’s office. Add heat or movement and you have an MG explosion!"

And I think MG is not unlike earthquakes. The higher the quake is on the Richter Scale, the more exponentially worse it gets. The more you do with MG, the worse it gets.

And doctors often say how "scientific" and "objective" they are (no offense meant) but then they ignore the obvious or don't validate tests like pulmonary function tests that are objective. They often say, I believe out of ignorance, that PFT's often appear worse due to a "lack of effort." Or if you have hyperventilation on an arterial blood gas that you must be anxious. Or (sorry, Rach, I HAVE TO use this one) that you are holding your breath when your O2 stats tank.

There's nothing easy about this disease, from diagnosis to treatment, that's for sure. And quite often, neurologists do not make it any easier. As if we are all "faking it" or want to be sick. Poppycock.

I'm sorry you are in a wheelchair but thank goodness you can afford one.

Annie

[alice md]

This is something I find hard to understand.

all the neurologists I have talked to, have an excellent theoretical understanding of this illness.

yet, most of them can't seem to be able to "translate" it to real life.

they all know what fatiguable weakness is, they all know that the fact that a patient can push your arm once in the clinic does not mean much.

they all know that what the patient tells them about his symptoms is at least as important as the brief and "snapshot view" examination they do in their office.

and they all know that this illness tends to fluctuate, and the fluctation may be quite "crazy". one even said to me- it's this illness that is "crazy" not you, when I felt quite embarassed to tell him about those obscure symptoms that made no sense to me at that time.

sometimes I have a feeling that they have in mind some "ideal/ classical" MG patient, that has well defined symptoms, well defined adaptation to this illness (not too much, as then you function will be too good, and not too little ), well defined emotional responses, well defined personallity, well defined response to treatment ( just in the right pattern and tempo that they expect for each medication),

and if and when, you fail to fit this prototype, then they really get lost.

or mabye as I have said before its just me, and a few more "rare birds".

alice

[rach73]

just to let you know Im still holding my breath LOL!!!!

Rach

[alice md]

Originally Posted by AnnieB3

Alice, This is probably the sticking point with MG, at least between me and some neurologists. This is something I wrote when I was ticked off at them for ignoring the obvious.

"I still think it’s funny when neuros say that your MG is mild; like it’s an inert gas. Of course it’s going to be mild just sitting there – inert – in a doctor’s office. Add heat or movement and you have an MG explosion!"

And I think MG is not unlike earthquakes. The higher the quake is on the Richter Scale, the more exponentially worse it gets. The more you do with MG, the worse it gets.

And doctors often say how "scientific" and "objective" they are (no offense meant) but then they ignore the obvious or don't validate tests like pulmonary function tests that are objective. They often say, I believe out of ignorance, that PFT's often appear worse due to a "lack of effort." Or if you have hyperventilation on an arterial blood gas that you must be anxious. Or (sorry, Rach, I HAVE TO use this one) that you are holding your breath when your O2 stats tank.

There's nothing easy about this disease, from diagnosis to treatment, that's for sure. And quite often, neurologists do not make it any easier. As if we are all "faking it" or want to be sick. Poppycock.

I'm sorry you are in a wheelchair but thank goodness you can afford one.

Annie

Annie,

you are right, I am really fortunate, that apart from this illness, I pretty much have anything a person could wish for.

I not only can afford a wheelchair, but many other tools and aids, without which I would be pretty much bed-ridden and not able to do much a significant part of the time.

I also have enormous support from friends, family and colleagues.

and I agree with you that physicians are many times not more objective then their patients, and although there are many scientific aspects to medicine, it is not of much use without the art of it, as well.

and I too have heard that I am not "putting enough effort" into my respiratory tests. (when my pulmonologist said if I would put a bit more effort, he would have to "scrape" me from the floor). and that I was "hyperventilating", and that I was "not breathing" (as if I didn't notice it myself).

why did they think that (forgive me for using this word-BS)? I wish I knew.

cause' if I could figure out why they think that way, I could probably find the way to explain to them why they are wrong.

as you have said, I am very fortunate in many ways, and that is why I manged to get out of this, with out too much irreversible physical or emotional damage. ( although you can never know what would happen if.. and I don't want to think about that too much, as what good will it do anyhow).

and that is why I want to do everything that I can, using my professional and personal experience, to change the way this illness is managed so that there will not be many more patients in the world that will have to go through this.

does that make sense?

alice

[AnnieB3]

Yes, it makes sense. More than you know.

Annie