[shalynn]

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.

[busybusy]

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

Originally Posted by shalynn

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.

[roguepuppet]

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

Originally Posted by shalynn

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.

[shalynn]

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!

[Twinkletoes]

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

good luck with your dr appt, puppet!

[craftyRCC]

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

[Stellatum]

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

[shalynn]

Originally Posted by craftyRCC

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

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!

[shalynn]

Originally Posted by roguepuppet

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

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

[Annie59]

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