I live in Ohio, but in the middle., I go to a wonderful neurologist in Youngstown, He is very familiar with MG, If you need any info on him let me know.

I am very open to any good neuros in the midwest. If I have to I will save and go at some point in the future. Thank you for the offer. Anyone see in Kansa City? I had heard that is good place to be seen. Heard they have a very supportive MG foundation that helps at the visits.

Annie59

Shaylynn,

It may not be a good idea to go off Mestinon without talking to your doctor, although I understand the reason why you want to experiment. My neuro told me that it was dangerous to just stop taking Mestinon, that it had to be slowly reduced and if I ever wanted/needed to stop taking it that I needed to talk to him first. I don't have any facts about this, only the warning from my neuro. Please be careful.

Shalynn, My heart almost can't take this mistreatment of patients anymore by neurologists. I'm sorry you were treated in this manner.

Maybe someone should teach patients how to respond to such odd questions like "What do you expect out of this visit?" How about "I expect you to do your job, do you have a problem with that?" or "I expect nothing but hope for an answer - do you think you can give me one?" or "I don't expect anything. I would like to know why I can't walk or breathe well besides the knee-jerk, irresponsible conclusions that my symptoms must have something to do with depression, anxiety, fibromyalgia, chronic fatigue syndrome or witchcraft."

I am beyond angry at neurologists who think every single woman, possibly some men, only have a "mental" problem and not a very real physical disease. It should be illegal to treat patients in this manner. No offense meant to people who actually have those things wrong with them - they are real problems. It's simply not scientific to declare someone has any of them without PROOF and certainly not after a twenty minute appointment without doing any testing to conclude that.

What can you do? First, take time to build your ego, confidence and thoughts back up, since this doctor tore you down, whether he meant to or not. Pull all of your records together. And read them. Put all of your symptoms down on paper in a succinct and logical way. Take photos or videos of yourself for documentation, like photos of ptosis and put together a list of questions (i.e., If this is fatigable ptosis then how could it be a mitochondrial cytopathy?)

Get an objective and "blind" opinion from both a pulmonologist and neuro-ophthalmologist. Bring no records. Bite your tongue. Simply say "I noticed that my eyelid was drooping" to the N-O or "I'm a bit short of breath and wanted to make sure all was okay" to the pulmy.

Do you know how our family friend just got diagnosed with MG? Well, besides the fact that she has AChR antibodies. She went to see her neuro for something else. She couldn't get up out of the chair to leave. Since "floppy" is one of the descriptors for MG in what little is in the medical books on it, the doctor ordered the blood tests. Only the AChR though, and a chest CT. But then she was of little use beyond that since she doesn't know squat about MG.

Some mitochondrial diseases can be helped, as you obviously know. You know, I never "argue" or "discuss" with doctors much anymore. I simply nod my head. They honestly can't "handle" patients who can intelligently discuss health issues. The only places that can do a good enough muscle biopsy to figure out if you do have a MC is Mayo or Johns Hopkins. You only want to be sliced apart once, believe me.

And no, it certainly does not make sense to declare someone has something wrong or not without doing the tests to prove or disprove that "theory." This is an excerpt from my book which, for me, sums up how unscientific many doctors really are.

This is the chapter where I use Wonderland as a metaphor because it fit oh so nicely for neuros. I should note that I had written it before I knew Alice (our Alice) but since then it's been nice to think of her in that way (as a good example for doctors).

The "algorithm" for diagnosing MG is evolving. The old one was all about "Gold Standard" this and "MG is the most well-understood autoimmune disease" that. Frankly, I think celiac disease is the most understood and they are still discovering things about it. You know doctors, they need to know EVERYTHING. Not possible. So when he said he needs MG to show up in "tests" he may have meant not only the antibody tests but an EMG or RNS or SFEMG or Tensilon test, etc. I honestly don't have a clue what he meant, I'm only guessing.

I'm with Susan on the playing around with Mestinon. It can be dangerous to quit cold turkey, especially without a doctor knowing and approving that. I've done it a few times but, again, only with my prescribing doctor's knowledge. Then if you tank, they are ready to recommend a course of action.

I really think this "diagnosing" of patients with MG - or other diseases - has gotten to the point of the ridiculous. They throw drugs at patients without a thorough diagnosis and then sit in wonder when the patients have a SFEMG on the drug and it's negative. I don't believe this will change until there are diagnostic centers meant only for diagnosing patients. And, no, I don't mean places like Mayo. But my wishing won't help you, will it?

I don't know what more to say other than pull your damn bootstraps up, again, dust off your tenacity and make someone help you. There are nice, good doctors out there, willing to do what it takes. In the meantime, do what everyone else is saying: BELIEVE in yourself and your instincts about your health. So far, they haven't proven beyond a shadow of a doubt, not even close, that there isn't something wrong.

I can just hear a neuro saying, "Well, I have proven that I haven't proven anything and, therefore, I've proven I've done my job."

Hang in there and be good to yourself.


Annie

being a physician and having to deal for quite a few years with a very "out of the box" illness, forced me to question almost everything in my life.
at some point I had to make the choice that it was either something was wrong with the way we (as physicians) are brought up to think, or I didn't exist. and I chose the former...

medical thinking has to be stereotypic to some extent. you have to try fit patients into known boxes or else there will be total chaos. yet, you have to be aware of the fact that those "boxes" (we call diagnoses) are not strict, and there will always be outliers.

when I was a medical resident (long before I became ill), we had a patient with a very peciuliar illness. he was a VIP (a retired physician in the hospital I worked in) and was seen by the best pulmonologist, the best nephrologist, the best rheumatologist, and none had a clue of what it could be.
one day I walked into his room, and saw an enormous pile of "kleenex" boxes, and he ordered his aid to go and get him some more!
obviously, the first thing that came into my mind was that this eccentric old man, was a bit of a lunatic. why would he need so many boxes of tissue in his room? but then, I got over this first thought and asked him, why?

he told me that he has a constant runny nose, and uses a few boxes each day. Eureka! he has Wegener's. I thought to myself. I ran to the pulmonologist and said- maybe he doesn't have asthma but Wegener's? come on, the guy said to me, you think I didn't consider that? but, look at his Xray- it doesn't fit. I didn't give up. I went to the nephrologist and threw my idea- I got a similar answer- how could I be so stupid not to know that the ratio between his urea and creatinine do not fit.

but, being a stubborn person, despite the fact that this diagnosis was so clearly "ruled out" I sent a blood test. 2 weeks later the other resident working with me on the floor came very excited and told me, that they have finally found out what this patient had. what? I asked? Wegener's. someone sent a blood test and it came back unequivocally positive.

patients just don't read the book before they come to us. they don't know how their chest Xray should look, or what the "right" ratio of their creatinine should be. or what their SFEMG should look like etc.

being a less knowledgable resident and not "knowing" that the the ratio, Xray etc. don't fit gave me an advantage over those highly experienced physicians who were stuck in their conceptions.

being a hematologist and not "knowing" that you can't have myasthenia with out an abnormality in the NMJ gave me the same kind advantage over the highly experienced world leading experts.

I am very cautious in my own field of practice not to become a 'world leading expert" and not to be too "knowledgable" in anything. and to always ask my patients about what ever I don't understand. I know that as much as I know there is so much I don't know. and I am constantly trying to learn.

" You know, I never "argue" or "discuss" with doctors much anymore. I simply nod my head. They honestly can't "handle" patients who can intelligently discuss health issues. "

I took a different approach. I try to find those that can. those that expect me to nod my head and agree with what they say, as if it were the words of god, or think it is unreasonable from me to ask them to waste their precious time on understanding my illness, are of no use to me, and as soon as I realize that this is their approach, I nicely say good-bye. thank them for their "efforts" and move on.

physicians (including neurologists) just like people in general come in different sizes, shapes, intelligence etc. and when you (unfortunately) have an illness that doesn't neatly fit their box, you don't need an excellent physician, but an outstanding one. and there are (again unfortunately) not many of them around.

"Maybe someone should teach patients how to respond to such odd questions like "What do you expect out of this visit?" How about "I expect you to do your job, do you have a problem with that?"

I love this AnnieB3. AS much as I hate to admit it even I think I go in feeling enough 'less than' a doctor that I couldnt say this but I sure wish I could. Not that I havent gotten in a docs face a time or 2. I had more strength spiritually and mentally AND physically even 9 months ago. But now the fight way down.

I need a break from all this but as sick as I have been, so fragil that talking can go so fast that doesnt seem as possible. And then theres my totally messed up vision.........

Annie59

MG symptoms are tough things to explain to someone. I was blessed to have a neuro who really cared. Growing up, my father taught us to respect others' opinions, and you did not rebuke them. Even though I disagreed with many, I have a hard time voicing my opinion to them. I always feel guilty once it comes out of my mouth, so I don't say anything. I have had doctors that were very, very ugly. I just moved on. When my neuro ran tests to see why I was falling, he finally told me he wanted to try me on Mestinon. He had mentioned the SFEMG, and I would laugh and say that really hurts. But the last visit when he was talking to me, I asked him if I was someone he loved very much and was having some issues, what would he do. He recommended the SFEMG. So I agreed even though I did not want to experience the pain of the test; and yes, it hurt. I laughed when I told him that if I go through that again, he is going with me. When he asked me my opinion, I always say, what would you do or what do you think. I respect this person and I guess I have faith in him that he is going to look after me. That makes a world of difference. I also go in smiling even though I don't feel like it, and usually leave laughing. That's just me. I laugh when I am stressed. I can say he has done everything he knows to help me without shunning me off and without me having to make suggestions. This is the first time in years that I have finally gotten relief and knowing the enemy that I am fighting. My road has been long and hard. There is someone out there, it just takes time, a lot of tears, and a lot of frustration, but I am a believer that all will find the right one. I would like to say Merry Christmas to all who support this forum and the encouragement each one has for one another. busybusy

Are you serious? In their defense, I could see where some patients may go in with an ear ache, then start in on their ingrown toenail. I could see where that could take up a lot of time if everyone did that. But, what about people who do have a complicated case. If, as you say, they have seemingly unrelated problems that are pieces to the same puzzle? These people are getting the short end of the stick.

Sometimes I think doctors need fewer patients, but then I guess their rates would go up. I'm sure there are no easy answers. But, I can tell you that I think a big dose of compassion and empathy would be the most important "medicine" that a doctor could take.

I'm glad we all have each other! Thanks for your comment.

I have my Mestinon with me and I've told my husband what I'm doing. He is not happy about it though.

"PS sorry my first message turned into a rant".

Annie~Do not be sorry about your post!! Where else can we talk about what we are going through? This is a place where other people truly get it! From our symptoms, difficulties with diagnosis (some of us), and just living with being chronically ill.

I called the neuro that I saw the other day and asked about tapering off. The nurse called me back and told me that he said I could just stop taking it!

I'm guessing that the biggest danger from stopping it suddenly is that your symptoms will increase and possibly throw you into a crises. I could be wrong though.

Thanks for the input.