[Stellatum]

I'm nervous about switching, because I'm worried there will be a gap, and I'm worried that a new neuro might not be willing to give me the Mestinon, since I'm seronegative (waiting on MuSK results) and borderline-SFEMG. Here's why I'm unhappy with my present neuro:

1) He told me that MG means my immune system is attacking my thymus. Maybe he misspoke--maybe it just came out wrong. But for goodness' sake!

2) He suggested I try the Mestinon every three hours and didn't warn me that too much would make me weak. Lucky I knew that, or I would have assumed I was suddenly getting worse and needed to keep up the 3-hour dosing--I could have brought on a crisis!

3) He sent me for a CT-scan of my thymus and insisted on contrast, though the radiologist said it wouldn't help. I never did have that CT-scan--no one was sure whether Graves' patients can have idodine. Later I read on the MGFA website that iodinized contrast dyes are to be avoided by MG patients!

4) His secretaries have lied to me repeatedly ("yes, all your tests are in. Oh, the acetylcholine receptor antibodies test? Let me check...nope, those aren't in"). I got that three times.

5) His secretary made four mistakes on my CT-scan order. First she ordered it of my head. Then she faxed it to the wrong place. Then she ordered it without contrast, which made the neuro insist I repeat it with contrast. Then she ordered it without contrast _again_.

I would put up with that sort of incompetence for a really good neuro, but not for this one.

Sorry for going on and on...there are no MG specialists in my area (RI). I found two who specialize in "neuromuscular disorders," though, and I'm thinking of calling to ask if they have experience with MG.

Does that sound right to you guys? I just can't tell whether this disease is so rare that it's unrealistic to find a doctor who knows much about it--or whether I've run into a clear case of inadequate treatment.

Thanks again for all your support. The courage and kindness of the people here always cheers me.

Abby

[AnnieB3]

Abby, All I have to compare this to is my experience with an MG expert. Nope, this is not sounding good.

First, write out a request for your medical records, including the labs, doctor notes, etc. That will be revealing.

Second, and this is just my opinion, don't say anything to them directly. Not even if you decide to see another expert. Why? Because you don't want them to even think for one second you could sue them. I'm sorry but that is how many doctors think these days. One of the many situations in which they think you may is when they diagnose a patient and the patient stops seeing the doctor. It's just how they think.

I suppose the secretaries (do they still use that word these days?) could simply be uneducated.

No doctor has the right to "insist" on anything. That's tantamount to abuse/doing something against your will. There are exceptions to this in medicine but it usually involves you being a threat to yourself or others. You have the right to say no to any test or any treatment. And not only do MG experts know this about iodine, some of my other doctors do too.

Maybe this guy knows something we don't . . . MG attacking the thymus. That's actually an interesting thought. Not commonly thought to happen, mind you, but interesting.

Would you be willing to travel to a state close by for a diagnosis? Does anyone here know of good neurologists in RI or nearby?

Believe me, I know how frustrating it can be to not only not trust your doctor but to be faced with this kind of uncertainty. The best thing you can do for yourself is to obtain a second opinion. It might even be worth starting the process all over again, by not saying you saw this guy. I don't advocate lying to any doctor but sometimes it seems you may need to omit the truth for awhile. Long story but it involves being "red-flagged" and "blacklisted" by doctors in my state. Pretty awful experience which involved the first neuro dismissing my concerns and then the rest of them covering his "you know what" after I got diagnosed with MG so he wouldn't get sued.

And yes, Lizzie, I know . . . there are really good doctors out there! But it's not the good ones we need to protect ourselves from.

Abby, I just hope you can figure out for yourself what you want to do and how to do it. A fresh set of eyes always helps anyway, especially when you are facing having an autoimmune disease the rest of your life. And a good neuro does indeed say things like "Mestinon can make you worse if you have too much." Even one who isn't an MG expert.

Good luck!

Annie

[Stellatum]

Thank you, Annie. I am trying to figure out how to handle things delicately. I wrote up a careful list of my complaints, while I remembered the details, but I'm not sure what to do with it. I will take your warning to heart before I decide to give it to my doctor. It hadn't occurred to me that it could cause me trouble down the road.

I should clarify--when I said that my neuro insisted I have the scan with contrast, I only meant that he asked me to have it redone after it was done without contrast (his secretary's mistake). I told him I would. The radiologist was displeased--I guess sometimes the prescribing doctors leave the decision about contrast up to the radiologist, and this radiologist thought the contrast was useless. But nobody pressured me to have it done. After an hour in my gown on the table, waiting for everyone to figure out whether the iodine dye was safe, and whether it was worth getting the thing done anyway, I announced that I would be going home now, and that I'd be happy to come back some other time after they all figured everything out. They were all very agreeable to that! By then I had a wanging caffeine-withdrawal headache (a fasting test...delayed...) and wasn't feeling very patient.

Thanks again, Annie, for your help.

Abby

[suev]

let me add my two cents worth - -

CT scans are expensive and expose the patient to a fair amount of radiation.

I would not have repeated the CT scan unless they paid for it...since they wrote the orders incorrectly to begin with (remember, the secretary is the AGENT of the doctor if/when submitting the docs orders)...and maybe not even then.

I would ask for a copy of my files - - but I do that with every doctors visit. This keeps my files up to date and keeps me out of any difficulties if I decide to change docs.

My first neuro was like yours - tons of tests (MRI, CT scans, some blood work). On second visit he said tests were all negative - no brain tumor - but he wanted to refer me to another neuro (50 miles away - turned out to be an ALS clinic).

I got irritated (to say the least), did a tap dance on my PCP's desk and suggested this was a worthless refferal. Then found my own neuro (who has been great!). Upon in office exam, the unoffical dx was MG - ALS was virtually ruled out, and the future possibility of other AI disorders 'moving in' were considered.

My opinion (very much like Annie's)...choose the time and place to have your 'tap dance' , but always let your feet take you to a place where you feel comfortable and have confidence in the team (doc, PA's, LP's, secretaries, etc.).

There has got to be another doc within a reasonable distance. How close are you to Boston or Hartford?

Sue

[Stellatum]

Sue,

I'm about an hour and a half from Boston and Hartford--not impossible, but I'd like to see a neuro I can get to easily. Riding that far is difficult, because of my weak neck, and driving's almost impossible. I think I'm going to call the neurologist who did my SFEMG. I liked him a lot. I read that he specializes in neuromuscular disorders, and maybe he has experience treating MG. And maybe--this just occurred to me--since he did my SFEMG, I'm already considered an established patient and won't have to wait a month.

Thanks for your help,

Abby

[AnnieB3]

Abby, I think traveling to get a 2nd opinion from an MG expert is a great idea. You can then always have a local neuro do your ongoing care. It's also a great idea to see the guy who did the SFEMG, if he is taking patients. Sometimes doctors only do testing. You sure don't want to jump around too much from neuro to neuro, that is fraught with problems. They all know each other and sometimes they think you are "doctor hopping" or "doctor shopping," hoping the next neuro will find something wrong with you when there isn't.

It's nice to have "proof" so that you can move on to dealing with this disease!

Annie

[Maxwell'sMom]

Hi Abby, I'm all for a person getting a neuro, or any doctor for that matter, that they feel comforter around.
You have to have good communication with your doctor, and be able to put your trust in his abilities. I once had a doctor that everytime almost with out fail, I'd leave feeling more frustrated than when I walked in. The communication was awful. I always had the feeling that it was my first time there, it wasn't a good feeling.
Your health depends on that relationship.
How far are you from John Hopkins? They're known for having good doctors.
I know how hard this is for you.
Praying for the best.
((hugs))
Lizzie

[Stellatum]

Thanks, Lizzie, I appreciate it. I have managed sooo many doctors over the years, especially since one of my seven kids has congenital heart and liver defects. I'm still sort of not sure about this one. He is respectful and doesn't rush me, and there's nothing I want him to do that he's not doing--I mean he has given me a tentative diagnosis even without positive tests, and is willing to prescribe MG drugs for me. He's testing for the right stuff, too--first the AChR antibodies, then the SFEMG, now the MuSK.

When I first came down with Graves, I went to a doctor who saw my mild hysteria (Graves will do that to you) and wrote me off as a hypochondriac. That was devastating, and it delayed my treatment signficantly. This doctor is very respectful and takes me completely seriously--he hasn't given a hint of suggestion that I may be exaggerrating. So, those are plusses. I mean, I've had much worse doctors!! I don't want to trade him for an unknown who turns out to be worse. And I don't want to burn bridges.

I'm about 12 hours from John Hopkins...

[Maxwell'sMom]

12 hours, would be way too far for me to travel. I weaken so easily. I was hoping something like 3 at the most for you to just to get a second look from another neuro.
You may want to keep him for while longer, and everything may work itself out in the office as well.
Sometimes things work like that, at first everything is crazy, and then it settles down, and you're able to have a great relationship with him, and the office people.
It's such a hard decision, I think many of us have been there at some point.
My very first Neuro, was nice, but she was hard talk to. She didn't seem to understand English very well, and I'm not good with thick accents, so that just added to the frustrations.
I stuck with her for a while longer. And then ended up seeing the original Neuro I was suppose to see in the beginning, they're in the same office. She also was the one who sent me out to Cleveland Clinic for their opinion. So she did some great things for me, and my health. But as a long term doctor, she just wasn't right for me and my illness. She didn't know much about MG. She thought that if your eye lid closed, it would stay closed for 24 hours, and wouldn't be able to open at all....stuff like that..knew nothing.
Maybe this guy will be your stepping stone too. Or, may turn into a great doctor for you.
Either way, you have my prayers to make the best decision, as I know it's hard. really hard.

Love Lizzie