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Originally Posted by alice md
Hi,
First, its great that you do not have any life-threatening symptoms.
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None that I am aware of... But from what I understand with MG is things can change in a hurry for some people,.. and no two people are identical, ... So I may have a quite dysfunctional case of symptoms .. as of now it isn't causing respiratory problems.
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Second, my advice is not to "rehearse" for your physician.
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I never have. I've seen several physicians over the past several years, not rehearsed for them.. and have gotten lackluster results to put it lightly. Some seem like I know more than they do, -- example: One GP said "You know, I don't all that 'stuff' but I can point you to someone who does". Although she never did "point me". I've had one that just gave me a blank stare after I opened up and admitted I had some serious issues that were really effecting my daily functioning. He had no answers.. he was just sitting there listening like he was a psychologist
The third GP/PCP seems smart,.. and has run more tests than all the others (which they've only run one XRAY),.. but he is coming up with nothing, and I sort of dropped him after he was getting no where with his, lets run this blood work (oh and what is your main complaint?) and see me in 8 weeks... run around.
I've yet to mention Myasthenia Gravis to any PCP/GP -- mainly because it is really a neurologists position and I really only learned of it and believed it applied to me somewhat recently.
So I sort of need a 'game plan' going in.. if not for the doctor's benefit for my own self confidence of the appointment.
You see, I've been let down so many times, and spent so much money with doctors for, so far, no results that everytime that happens the possibility of finding an answer and getting better becomes further and further away. I don't know why, but it really bothers me when I leave a doctors office and have been basically run through a machine of sorts, money taken, and brushed off without any 'plan' to figure things out.
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A good physician will know what questions to ask and how to pick the needles from the haystacks.
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Yeah, but finding this guy is like finding a needle in a haystack. (for me).
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My advice is to ask yourself what bothers you most, and concentrate on that first.
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Hrmm.. well it is quite hard to pick out the worst. But I guess I would sum things up with my vision being number one bothersome disorienting factor, followed by pain, then weakness, and what I can only describe as "cognitive difficulty". Which I can only give examples to explain that one.. IE: Short term memory issues, working memory issues, forgetting why I walked into a room, or why I opened a drawer, simple things that I do remember a few minutes later, but should be accessed immediately. I have to actively TRY to think hard and concentrate to say, make a sandwich.
I feel like I'm in this constant fog, disorientation, which makes you anxious and feel weird. With my vision being double, with starbursts, and halos,.. plus slightly vibrating (like a heat shimmer) 24 hours a day I can't decide if the vision makes me disoriented or it is just another side 'effect'.
I put what most people would put first.. the constant pain and stiffness in neck and back (and general body) and weakness as the lower on my list.. because having your mind feel off is scary stuff..
This would be SO much simpler if I just had one of these issues going on, so I could easily just walk in and say, Doc.. it hurts here.. whatsup?
For the eyes I've been to an optometrist and ophthalmologist who both find nothing 'physically' wrong the eyes. So it perplexes me -- either I'm hallucinating 24 hours a day, .. in the same way for the past 6 years.. or something has been missed. Perhaps neurologic.
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And most important during the visit in his clinic, and the way he responds, ask yourself if you feel he/she is the right physician for you.
Some physicians don't know how to deal with a patient with a "mystery illness" and others will become your partners and do their best in working out the best management approach.
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Exactly -- I have yet to find a doctor who I feel confident is COCKY enough, and smart enough in their ability to say.. Look ,.. we WILL figure this out. It may take some time, and testing,.. but we will get to the bottom of this I won't give up on you.
That is what I need. Someone I can finally drop this burden on.. that I have faith will do their job to figure it out and I can be the PATIENT and just follow orders till we find things out.
I have no problem if a doctor is thinking, man I don't want to deal with a patient like this.. or I have no idea what this could be .. if they would just tell me right away the truth , and that I should move on to someone else. Problem is many of them just don't like to admit when they don't know,.. or don't care to find out -- so will either just give a diagnosis that has no treatment.. or tell you it is Anxiety. Psychosomatic only goes so far, imo.
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After all, what you are really interested in is not the fancy name of you illness, but to receive treatment that will make you better. So, finding someone who will make a brilliant diagnosis, but not do much from there is not what you are looking for.
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No I could care less about what its called. I've told my PCP this -- I've told him, I don't care if you tell me I have to stand on my head as treatment, if it works, it works.. (not being literal of course). I just want to feel better , to have some semblance of the quality of life I should have at this point in my life. No one is at fault here,.. but this stuff isn't free, so you do have to make your picks.. and there really is no rhyme or reason or great methodology of finding this 'great' doctor.
What was great for one person.. may be terrible for you. I've found you have about as much luck finding one throwing darts at the yellow pages as you do trying to research a doctors credentials.
Sure it does -- I appreciate it.
I'd still like to know what some of you do that you notice applys to most all MG'ers to make things worse noticeably. I'm curious.
Take care,