Another humiliating doctor's visit...what would you do now?
 

OK, so once again I made an attempt to find a local neurologist and, once again, I failed miserably (or rather, they failed me). I have one, who is three hours from me, that I love, but we both agreed that it would be good to have a local one to help me out if needed. I have a new PCP who is wonderful and he is the one who feels very strongly that I have MG and he prescribed the Mestinon (this trial was suggested by my eye doctor and I called my out of town neuro to ask her opinion and she wanted me to start it too).

The first words out of this neuros mouth were "What to you expect out of this visit?"....Well, I was kind of taken aback by his tone and the question itself (not that it's a bad question, but as I said, it was his tone), so I started to tell him my symptoms. Then he said. "No, I asked you what do you expect out of this visit?" I said I want to find a doctor who will help me. He starts in on how many doctors I've seen in the past, how he just spent 40 minutes reviewing all of my records. Some of which, I don't know how he got. One record was a neuropsych test I had done early on that said I might have an element of conversion disorder to my illness. I have since read that any time you mark that you have pain, tingling, etc it automatically puts you in that category whether those are real symptoms from a real medical condition or not. I had another neuropsych test later which did not show that to be the case, but I have to admit I purposely did not mark the pain questions...funny how that works. I also saw a counselor and he said def not a conversion disorder...he explained how the personality tests aren't always accurate when a person has a chronic illness. I can tell you this, I'm certainly not getting any secondary gain from this. I still do 98% of the housework, still cook, still work, etc. I don't get any specialized treatment from anyone and I really don't want it. I do get help when I ask for it, for that I am thankful.

Anywho, this neuro says that I should stick with my out of town neuro because she believes that I may have mitochondrial disease. Then he tells me there's nothing they can do for that anyway. Not true. It's not curable, but there are some treatments. He said he felt like I was too complicated of a case and I would be much better off going to someone who knew more (I can't argue with that). Anyway, he said I could continue taking the mestinon, but he'd rather my other doctor prescribe it. I started wondering if he might have been concerned about getting sued if he took me on as a patient. He said that the Mestinon could be giving me a placebo affect. Huh?? I'm not saying that's not a possibility, but if that's the case, why isn't it more consistent? Why does it help me sometimes and not others. He also mentioned how many neuros I'd seen in the past and I said it was because I'd see one then they'd do one test, then blow me off. He did say that I should have a single fiber EMG, but said they aren't done locally. He never mentioned the MUSK test. He did say you could have MG and the blood tests wouldn't show it, only he more or less said he didn't prescribe the Mestinon unless it showed up on the tests...huh???

He did finally get around to doing a five minute neuro exam. He said I had some "funky eye movements" going on (his words). Really? If he would have let me talk I could have told him what was going on with me. How my eyes get so bad I have a hard time driving at times, how I have difficulty breathing, how I have trouble folding laundry, washing my hair, walking even!! I told him I have a good life. I have a wonderful family, wonderful job, I am blessed. I just want to feel good again.

Part of me is glad that he took the time to review my records, but honestly, another part feels as if it's a cop out. He had already made up his mind before he saw me that he wasn't going to be my doctor. Why can't doctors look at you through fresh eyes... their own??? Do they have that little of faith in themselves??

I'm trying to decide if I should continue the Mestinon or not. I'm going back to my PCP to discuss this and also making an appointment with my doctor in Indianapolis.

Thanks for letting me vent and for any input you can give me.

I know how you feel. A few years ago my regular MD got tired of me complaining about leg pain and exhaustion and used a ugly tone on "what do want me to do." Help me I replied. And yes, I went through the antidepressant deals feeling like a zombie. I finally was sent to a dr who specializes in fibromyalgia. After a few minutes of twisting my limbs and poking a few places in rapid time, I was told to go back to work and learn to live with life. When you become a certain age (56), these things happen. Then since I was falling a lot, I was recommended by this dr to see a neuro. I had blood work done and a year later they called and wanted to see me again. No clue as to why. Blood work was repeated and single fiber EMG was done. All was positive. Needlesss to say, I found me another primary dr. I don't go see the first one anymore. It is heart breaking. I have cried many tears because I was losing it. No one believed me or took me serious, and just kept hounding me with responsibilities that I could not handle. The fibro dr and neur dr are good and I have the upmost respect for both of them. I feel so bad for you and know exactly how you feel. Hang in there. Something positive has got to come out of all this. I have been fighting this unknowingly for several years. Stick with your PCP and I am sure this one will see you through especially if they believe in you and it sounds like they do. Dust the dirt off your sandals with the other ones and keep on trucking. Good luck. busybusy

who is ur dr in indy?? about to see a dr there.
if u r three hr from indy, depending on the direction, you are not far from me

Thanks Busybody. I'm sorry you've been treated so poorly too. I think you are right, my PCP and my neurologist in Indianapolis will help me. I guess I was just over confident that I could find a neuro willing to work with me here. I think going through this has made me realize how strong I actually him and how much I have to advocate for myself; even if I'm too sick to do so.

Thanks again!

I see Dr. Frazer. She used to be with an MS clinic which has since shut down. She is an absolute angel! I have nothing but good things to say about her. Are you the one who is going to see Dr. Kincaide? I saw him once and he was very nice. He is supposed to be very up in neuromuscular disorders. At the time I saw him, I was having more neurological issues than neuromuscular stuff, so he didn't really help me. I'm thinking about seeing him again though.

Oh, I am about three hours south of Indy. What direction are you in? You can PM me if you want.

Shalynn

((((shalynn)))) ((((busybusy))))

good luck with your dr appt, puppet!

Shari, BusyBusy,

It's so frustrating to read stories like yours. It's so impotant to be your own advocate no matter how tiring or hard it may be. No one else can make the doctor's understand what you are feeling. Sadly some people have to go through many "frog doctors" before they find the "prince or princess doctors"

Nan, good luck on Friday, Go dancing or something Thursday, maybe you'll poop yourself out for the test!

Keep the faith, stay strong. A positvie attitude goes a long way.

Remember we might not have all the answers, but we are all in this together!

Rachel

Shalynn, I'm so sorry for what you've gone through. That sort of experience just saps the hope out of me. It sounds to me like this neuro is scared of you because he doesn't feel qualified to treat you--and is thus trying to discourage you from seeing him. I'm so sorry you're far away from the doctor who is willing to help you!

Abby

Wow Shalynn I am so sorry you got 'one of these' *******! This is very familiar territory to me. When the student who took over my case for a while for my internist was being so dissmissive suddenly I refreshed my memory on conversion disorder to be prepared. When he went into how many neuros had seen me I said so are you suggesting it is conversion disorder? He give me this big sit up and stare look and said "NO that is when you are paralyzed" suggesting then that I had said that because he had used the word conversion in another context. Wow! At that point I knew I knew more than he did about the subject!

I have had more than one of these and been referred once to a neuropsych for reasons I didnt understand until I found a great great person in the medical records department who listened to me and maybe had her own story. I asked her to go back in my medical record at the university because something was said in a report that I certainly never shared. She did find it and called me. AS she tried to read it she stopped unable to finish it as it was a short but too graphic. It had come from a gyno who I had trusted with a piece of the truth about my trauma. How in the world this doc thoguht any way shape or form that that was appropriate to send that to the univeristy as part of a referal for prolaspse surgery 12 years or so ago is totally beyond me. She was supposed to be one of the good ones. That was one of the first huge loss of faith I had in docs. Thankfully these days I remember my pulmo and know there are really good ones out there.

This medical records person took it out of my file and mailed it to me. I hadnt followed thru with the consult at that time or the surgery so there was nothing attached to it. It was just sitting there causing the first docs to treat me like pain was in my head and that I wasnt as sick as I was and just adding junk that was assumptions from the trauma reference. OUt of that whole university and all the docs I have seen there only one ever respectfully asked me about the trauma and what kind of treatment I had recieved. How sad it that. And how wrong is that.

I am a firm firm believer in needing to read your medical records. Even good docs end up with things getting transcibed wrong at times.

Annie59

Seriously, we got to stop seeing the same doctor. I swear I heard that very line, even when I clearly stated what I wanted (should I have my thymus removed), the doctor was determined to say only his doubts of whether I have MG.

Then, it got worse.

Anyway, you stay the course. You make those doctors work to find out what is wrong with you.

Hey Rachel! Thanks so much for your encouraging words. I have to keep remembering how blessed I am for having my neurologist in Indianapolis and my PCP here in town; both of them are wonderful, caring doctors.

I'm glad we all have each other because if I was alone in all of this, I would be in bad shape!

Thanks again!

Abby, Thanks for your reply. I agree, this doctor doesn't feel as if he's qualified to treat me. And, while he actually did, more or less, have the guts to say that, he had to throw a few words in there about how some of this could actually be my fault! That, I could have done without.

Honestly, I am going to become some sort of advocate, somehow for women in healthcare. I don't know what I can do, but something needs to be done to change this system we have of blaming the victim and of doctors not doing what we've hired them to do. I am woman hear me roar! lol

We can all be a little hopeful in that we can learn so much from each other. That's one thing that keeps me going.

Thanks again.

Annie,

I'm so sorry for what you've gone through. I thought these HIPPA laws were suppose to help protect the patient. Honestly, I think some in the medical profession just do whatever it is they want to do regarless of the laws.

Stay strong!

Do you think perhaps there is really just one neuro and they've cloned him or her???? Maybe that's why so many of us keep hearing the same line of bull!

I'm sorry you've had troubles with them too. It's just not fair!!

I wont ever give up!

Update: I stopped Mestinon
 

Yesterday was my first day in a month or so that I didn't take any Mestinon. I did have more trouble swallowing and a bit more weakness, but it wasn't that much more noticable. I'm sort of experimenting to see if I'm having a "placebo effect" from the Mestinon or not (I really don't think that I am though). My breathing is what concerns me the most. I had some pretty scary symptoms related to shortness of breath pre Mestinon.

I do think this may take more than a few days to figure out. For one thing, my symptoms were pretty variable. So, yesterday may have just been a good day for me. If I'm having an especially bad day, then take a Mestinon that might tell me more.

I guess I want to prove something to myself and the obnoxious neuro. I know my PCP wants me to be on the Mestinon. I think I will try to get in to see him in the next week or so to discuss all of this with him.

I'll update you all in a day or two, sooner, if I reach any conclusions (hoping that doesn't mean a trip to the hospital!)

So, does anyone have any thoughts on what I'm doing? Is it a good idea? Could it really givie me useful information? Thanks for your support

So many similar stories in different illnesses
 

It is getting worse with doctors not having the time to spend with patients. One family member came back from a doctor's visit saying his doctor had a new sign up stating they can only talk about 1-2 things per visit. Huh? Sometimes the solution is in seeing the bigger picture which may be 5 seemingly unrelated problems that really are pieces to the same puzzle.

Shalynn, firstly I am on this mission too:
"Honestly, I am going to become some sort of advocate, somehow for women in healthcare" I am by nature a fighter or I wouldnt have gotten as far as I did. Someone told me from an MG organization that I may need to dial it back as many doctors DO NOT like patients that come in prepared, well researched and powerful. I guess one could say they want to be the 'the god' in the room. Well I have gone in weak as a kitten for the last few appointments because I have just been so much sicker. Certainly there has been no improvement infact me trying to make my case for MY truth of day to day disability end of 09 and beginning of 2010 seems to have sealed my case. Unless I get a doc like my pulmo ( and keep my pulmo from caving from the pressure) I am pretty much lost for any hope of diagnosis locally. If the neurology wont do a tensilon test based on what my highly respected pulmo said on the record even he isnt helping. I am unfortunately clear that I would have to have a devastating MG crisis for even a possible chance at diagnosis.

Lastnite I was thinking of my pulmo asking me if breathing worse wakes me at nite. He has asked me that more than once. I have had to say no. The truth I realize is that after these 2 plus years since the first crisis I "know" very closely where and what is gonna send me to the bad place, to the hosp. I dont do those things. Or if I have to do alot, a situation where I know it is risky I know to shut down and stop. I may be already in pretty bad shape from a family gathering or a trip to univeristy but I can recover. I learned in summer of 09 during another hosp that locally they have no clue and even getting some univerisity docs involved doesnt help. They called my internist and my family doc and not one of them told them to test my breathing. NOT ONE!!!! In fact a nurse walked me around intentionally to test me. That sent me into worse breathing yet they left me in an ER room alone and did not answer 4 calls with the bedside buzzer. I cried. My daughter had brought me in but had to go pick up her kids so she wasnt there to make them do the right thing.

I was hospitalized but still not given any tests. In the middle of the nite when my breathing was keeping me scared and unable to sleep I finally asked a nurse to get me ice packs to put on my chest. I was in the hosp and had to take care of my self!!

I am getting sad. Have to sign off for now. Mood is down today. I am scared. My body is so sick and I dont even know who to tell. Who will reallly help in an honest, caring fashion rather patronizing me.

Annie59

"Sorry Time's Up"
 

Jaspar, It's bad enough that sometimes appointments only last 10-15 minutes, or the doctor is 'double booked' but limiting the amount of things you're permitted to discuss seems like an all time low! It isn't easy being a patient!

Rachel

Shari, Good Luck" with your experiment!

Be sure to let us know how everything goes. Sending good thoughts your way!!!!

Rachel

Shalynn, Say I just wanted to say that tho testing your mestinon this way may seem a little risky I respect that you need to know. I was gonna post something about people changing mestinon doses. I had a nurse go nuclear on me when I said I had changed mine without doctors persmission.

I look forward to hearing how this goes for you. I have learned that as long as I have my mestinon handy I am pretty safe. But it is good to have a plan, to have a family member know if you are changing doses or just worse for that matter in case you need a doc.

PS sorry my first message turned into a rant.

Annie59

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." :eek:

Hang in there and be good to yourself.

:hug:
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:hug:. 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.

:grouphug: 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.

I will get back to respond to some of your other replies. I want to tell everyone though how much it means to me that you have all responded to me with so much compassion and caring.

An update on the Mestinon: I caved this morning and took 30 mg. I noticed that my arms were really weak and burning when I was holding the newspaper up to read. I also had a revelation that sort of put this in perspective for me. I'm not sure I can explain, but I'll try.

OK, since I've been on the Mestinon (somewhere around 6 weeks I think), I haven't had that pure exhaustion or the feeling that I can't talk or breath. I have been able to do more than I was able to in the past.

I think the doctor just messed with my mind. He made me doubt myself as to whether I'm really sick. I know that I am. I can go back and read my blog and see and remember how bad I was in the past.

I don't want to take the chance of not being able to breath just to prove a point to this neuro who probably doesn't care anyway.

I hope I've made some sense. It was a long night here.

Thanks again.

Shalynn, Do you have a medical alert card? If not, please consider putting one together. If your MG, or the "mystery" illness you have ;) gets worse, you need to have basic information with you.

Name, emergency contact info, social security #, insurance numbers, doctor names and numbers, diseases and associated meds, etc. I also put info about drugs that could make MG worse.

FYI.

Yes Shaylun perfect sense. I feel I was just where you are at a couple times. I started out strong and clear but as the tests came back negative and it became clear that my clear symtpms and mestinon use made no case for them things changed. They did where me down. I thought maybe one more neuro will be the one. That sure hasnt been the case. Or the pulmo who got so scared about my health after I did the pulm stress test resulting in him getting me right in to Mayo.

Much of the time I DO know that "I know my body." You are the expert in your body. I hope you can hold on to that nomatter what.

Annie59:hug:

Annie,
Thank you for your kind words and compassion.

You are so right! What happens to me is that I am taken so off guard with those odd questions that I get flustered and say nothing! Also, it gets me so upset that I blank out for the rest of the visit, neglecting to say things I meant to say!

I agree with you. In fact, unless they are a neuropsychologist they have no business diagnosing a patient with any psychological illness. In my case, I think the neuro believes that something is wrong, but he hinted that there might be a psych component to it. Ya think so??? Try being sick for six years and not knowing why. That would cause anyone to be a little mentally ill. I am on an AD and I have had trouble with anxiety in the past, but I am one of the most mentally stable person I know because I have realized when I needed help and sought out the treatment. It's as if these doctors think that a patient can't have both a physical and a mental illness at the same time. Or, to confuse them even more, a patient can't possibly have more than one illness at a time!!

I'm working on the ego building. I need to really start keeping a symptom diary. I do have the one pic I posted here of my eyes before and after Mestinon, it was shortly after I started posting here regularly. I made a video today of my wacky eye movements.

This is a very good idea and it makes a lot of sense! I know I def need to see a neuroop...the closest one is about two or three hours away. But I'm sure it would be worth it. A pulmonologist would be helpful if they would actually do the correct tests. I had a PFT which ordered by my PCP that showed asthma. But, I really need more extensive tests from what I've read. Especially ones done after exercising.

I did have a muscle biopsy done in Indianapolis last year. It was a frozen biopsy though. It showed some abnormalities, but nothing specific to any disease. One thing it showed was type 2 atrophy. I know this can be caused by disuse (which I don't think I fit that category), but it can also be caused by other diseases. Yesterday I read somewhere that type 2 atrophy can be caused by MG. Interesting. Oh, I don't think I had a very extensive exam of my muscle tissue either. No electron microscopy, just the basics if I'm remembering correctly.


Wonderland. That makes sense. Yes our Alice is a very good doctor. :)

I agree. But, what I don't get is how he could one minute say I could have MG with the tests being negative, but that he wouldn't treat me unless the tests were positive. This must mean that he doesn't really believe that you can have negative tests and have MG, or that he thinks, in my case, there is something else going on and he doesn't want to deal with it. I think there is probably a lot about MG that they don't know.

I did ask the "bad neuro" and he said I could quit cold turkey. So, that makes me wonder if he thinks that it didn't matter since I may have only been imagining that it was helping me. I'm confusing myself. I did start back on it again as I was noticing more weakness. Last night after dinner, I had to go straight to bed I was so weak just from eating.I ended up sleeping for two hours!

I think what we need is more neuros who will think outside the box. If you look at the MGF website it actually states somewhere that the clinical exam should probably take precedence over negative lab tests.

I am a very strong person. I'm a fighter and I know that there is something wrong. I have a PCP and a neuro in Indy who believe that too. I need to probably have regular appointments set up with them even if it's just for the mental health boost. I do see my PCP in Feb, but am going to try and get in before the end of the year.

Very Funny! And sad, really.

Thanks!!!!

I appreciate the time that you took to write all of this. You are helping me so much!

Shari,

I'm sooo glad you caved. That doesn't show weakness at all, a person can't struggle with an unknown illness for several years and be called weak. It shows a very strong, empowered person who only wants answers, so she can continue to fight the good fight!!

I can't begin to tell you how worried about you I was the last few days!!
Hope your starting to feel a little stronger,

Rachel

[QUOTE=alice md;725263]I'm sure that had to be difficult for you. I think those who aren't in the medical profession tend to think that doctor's automatically have it easier when they are sick, but I can see where that wouldn't necessarily be the case.

Why are there so many doctors who refuse to do this? Is it an ego thing? Is it something they weren't taught in medical school?


I bet that was an experience you will never forget either. You have to wonder what would have happened to that patient had the diagnosis not been made when it was made? That very thing is what scares me so much of not having a 100% diagnosis. How bad do I have to get before I get a diagnosis? My PCP said he is sure that is what I have. But, I get the impression that his diagnosis doesn't really count.



This is exactly what I have done. I have probably seen close to a dozen neuros. I think the danger in this is being labeled a doctor shopper. I am not looking for a neuro to give me a diagnosis that "I want" I am looking for a neuro to work and give me a diagnosis that I have.

Thanks so much for your insight and for taking the time to respond to my post.

Thanks so much for your reply. Your neuro sounds like a wonderful doctor. You know, I asked my PCP something similar, I asked him if his wife was having all of my symptoms would he want her on Mestinon? He said absolutely. He is a very caring doctor.

My neuro up in Indy is a good doctor too. I'm just going to stick with her. I guess I was getting too greedy to think I could find a neuro here in my home town that would help me.

So was your SFEMG positive?

Merry Christmas to you too! Thanks again.

Rachel, That's so sweet of you to be worried about me. It means a lot. As I said before, I am not giving up. I'm working on a plan of action as we speak. lol

TTYL!

Thank you Shalynn for this message. Spending so so much time alone it is as to be expected too much and the lid blows. If it didnt I'd end up with a heart attack.

This is one of the hardest things I have ever gone thru. When I was young and going thru a divorce it was horrible esp for my kids but I think when younger I was less aware.

I came from a somewhat tough place as a kid so I didnt expect much. I guess maybe I have come a far distance in that I have little understanding of a person who goes into a field to care for people that are ill and treat them poorly if not out right disgracefully!

Annie59:grouphug:

I think you have done (and are doing) the right thing. as long as you do not fit any known "box" there will be those that will conveniently label you as something any how and you really have no control over that, so don't worry about it. just do what you think is right. I always say that I like everyone, I am bound to make some mistakes, but I want to make my own mistakes not someone else's.

by the way, when you come to think about it, what's so bad about being a doctor shopper? if you want to buy a car, you will probably seek the best car-dealer, learn as much as you can about the different cars you can afford, consult friends and family what is the best, safest, most reliable car.

why shouldn't you do do the same, when it comes to your own health.

would anyone judge you for not buying the first car from the first car-dealer (who you could clearly sense was trying to sell you a cheap car at a ridiculously high price)? no, they would say how smart you are for not falling into his trap. so why should you be ready to "buy" the diagnosis a non-caring arrogant physician is trying to "sell" you or the treatment he has pulled out of his sleeve without thinking about the potential risks?

I can tell you that are some excellent and even outstanding physicians out there, and some I would not even buy a used car from. and many in-between. so why shouldn't you try to get the best?

and I think you should be looking for a neuro (or other physicians as needed) that will work with you, to find the best way to manage your illness. what matters is not the diagnosis, but the actual management. finding the right diagnosis is only one step in that process, and clearly not enough.