Who is considered best of best?
 

I am recently diagnosed. I have been strongly encouraged by many many personal and professional friends who I consider very intelligent and whose opinion I strongly respect (judges, lawyers, doctors) that Florida is not the pace to get treatment for complicated medical condition. They say I need to go somewhere like Hopkins or Mayo. I appreciate their concerns but after doing all the reading I can, I think it wouldn't matter mayo or Hopkins because seems like not too many options with treatment. Then I think, some have suggested Steve Jobs, who had access the best in the world, may have been around a little longer but for the fact that he chose not to immediately get that "best" because he thought he had read about and knew better.

Having said that, I am as happy as I think I can expect to be with my neuro although I think he is under treating me for reasons I am not sure other than that I think he wants to be cautious (one of problems with being lawyer is I think doctors are as a rule conservative with treating lawyers) but I do not think he really appreciates how 'disabling' my condition is and that I will be losing my law practice if things don't improve dramatically very soon. I am single, live alone (except for my 3 loving Italian greyhounds) and must have a way to support myself. So no, I dont think i am not going to be intubated anyday but every day I feel crummy a shell of my former self.

So I am curious what everyone else thinks about who, what, where the cream of the crop is and is it worth it to seek help there? I have heard Mayo, Hopkins but I know at least one person on forum has said they went and had horrible experience. I'd hate to use my savings for a useless experience. I went to University of Miami where they have MG clinic up that was Not good.

Given what I think is the widespread acceptance of what is limited treatment options, it seems better to continue to try to enhance the working relationship I have started with my current neuro and just keep pushing that he be more aggressive. Any words of advice, wisdom are greatly appreciated!!

I am curious too as to what everyone has to say about seeking out a very experienced MG doc. Here I am waiting 2 months to see a neurologist, and according to other posts, the probability is he has only seen 1 other MG patient. That does not give me a lot of confidence. Especially with all the post about how long it took most MG'ers to be probably diagnosed and then effectively treated. How does one go about finding a neuro specializing in MG?
kathie

Steph, That's actually not a simple question. :cool: The "largest" institutions who have the most research and resources available are places like Mayo, Stanford and Johns Hopkins - and the Cleveland Clinic - but does that mean they would be the best for you?

And that begs the question: What is a good MG doctor? I have a neurologist who is not an MG expert but is an amazing person. He listens and we discuss my situation. We are honest with each other and I trust him. He is super smart, which is always helpful. ;) And he's willing to learn more and has.

As far as Florida goes, the doctor who diagnosed my MG is Dr. Allan Weiss of the St. Petersburg Neurology Clinic. He studied under Dr. James F. Howard, Jr. of UNC, who is also amazing in every respect. I went to him because someone from another MG forum referred me to him. I'd been mistreated by the MG "expert" where I live and felt it necessary to seek out another expert. While that was a great experience, after a few years of spending money and energy I didn't have, I still had to find someone to care for my MG in my own state.

It might be worth your time to seek out a 2nd opinion from Dr. Weiss about your treatment options, etc. He is an MDA Director too and you might be able to schedule an appt. on an MDA clinic day. He can very intelligently discuss your situation, what the treatment options really mean and come up with a reasonable plan for you. He is the neurologist and MG expert I respect the most. Then you can bring that information back to the local neuro you really seem to like and decide how to proceed.

When you have MG, you really have to think about things in a long-term way. Traveling somewhere for on-going treatment from a doctor is exhausting and it might "tick off" your local docs if you do that. It might tick off your MG too. Believe me, I know. Some neurologists are so easily offended. :ranting:

And no one else can or should decide for you what you want to do! What do YOU want? What would make you feel reassured and confident in a plan for your MG?

MG sucks. There's no other way to say that. And life with it can be okay or horrible or somewhere in between. And it can be all of that for ONE person. :eek: You need a team - including a very good pulmonologist and internist - who you can trust! Evaluating MG takes more than a neurologist. A pulmonologist needs to do at least a yearly evaluation of your breathing. And they are the doctors who manage a breathing crisis in a hospital setting, along with the neurologists. Since your goal is "living well with MG" then you need to keep your doctoring and its related stress to a minimum!

You may have to decide, at some point, that being a part-time lawyer is all you can do; temporarily or not. So thinking about things like having short term disability insurance is a smart action to take. I personally think doctors are conservative with a lot of patients due to their fear of hurting them and having a subsequent lawsuit! ;)

Whatever you decide, you have to be happy with that choice. And I think rising sea levels might be more of a threat to you in Florida than the neurologists!

I have to add that managing MG has as much to do with common sense as it does with doctors and drugs. Alternating activity with rest, not pushing your body, nipping infectious in the bud, getting enough water, sleep and healthy food, etc. is as important as having a good doctor. It's a lot to think about, so give yourself some time to adjust! You too, Kathie.

All my best,
Annie

I am already flying to Tampa to see neuro, dr. Clifton gooch who is chair of neurology dept at usf. Each visit costs me a day of travel and about $300-350 in travel expenses but I found him after multiple here in south Florida that were completely unacceptable condescending and not very nice.

Also I am starting to think they make you wait for your appointment so long because then you are too exhausted, bored fom waiting around to remember to ask, tell them everything. Last time I saw him I wrote everything down beforehand and gave it to him and for whatever reason I think he thought it was too much, overkill and seemed to not want to read it all which ichalked up to fact that He had accommodated my travel and had just done three tests taking couple hours and was running behind.
He has been responsive to my requests to changes to treatment and it has only been 2 months but I was sick before and still. Anyway, now I am just ranting, sorry.

What could second opinion possibly be other than alternate treatment plan which I think I have reviewed, been able to know what those are?

Anyone use Dr. Bob Pascuzzi (not sure about spelling) he is from Indiana University, is a speaker on at least one of the MGFA podcasts (which are all worth listening to) and seemed to get it that symptoms that may not seem to be disabling to some are to others - example he used was if patient is news reporter then any slurring of speech is disabling/impacts career as opposed to every neuro I have ever seen who thinks not urgent/important/big deal unless you need to be intubated.

I have a great neuro in Chattanooga who is fast becoming an mg expert based on the fact that he now has 6 mg patients and has learned a lot since I started going to him in 2005. That said, he was all for my going to Vanderbilt for a 2nd opinion. I saw Dr Amanda Pelltier at Vanderbilt Neurology. She works with the MDA clinic and has treated quite a few people with mg. She is the one who started me on Cytoxan as an alternative therapy which I am currently still on.

I guess what I'm trying to say is that we all have to "shop around" and find the right neuro for us. Once we find that person, it becomes easier to manage this disease because that is one stress taken off your plate.

I would recommend you find your closest MDA clinic and give them a call to see if they can recommend a neuro who has handled mg. They should be able to at least start you in the right direction.

Good luck with your search.

I think this is a very hard question to answer, because it depends on what you are looking for.

By who?

By the neurological society?

By specific patients?

By patients organizations?

And in what way are they better than others?

Do they know more?

Do they have better bed-side manners?

Do they have better PR?

Do they have more publications in the medical literature?

Are they more open-minded?

What is the most important for you?

Knowledge?

Experience?

Technical skills?

Humanistic skills?

Prestige?

Wisdom?

What are your expectations from your physician?

A long remission?

Optimal treatment?

Finding the best way to live with your illness?

A true partner?

The answers to those questions will dictate who is the best of the best for you, which may not be so for someone else or for you at a different period.

On the list presented by alice md the only thing I personally am looking for is a a long remission.

Trying to find find the best way to live with your illness is really beginning to suck.

I do not care about anything else on that list with the exception of knowledge in that may be the only thing that may lead to remission.

A miracle, that's all.

On the list of the top 171 neurologists in the country, only one lists himself as an expert in MG Dr. William King Engel.
http://health.usnews.com/top-doctors...ge=4&distance=

I have no idea who compiles this list or if it's worth the paper it's written on.

scrubbs

The "best of the best" is the one that YOU feel the most comfortable with and who inspires the most confidence in you. If you aren't comfortable enough with your doctor to speak up about things that are troubling you, then you aren't going to have a good relationship.

A doctor doesn't have to be an MG "specialist" in order to be able to treat it well - they do, however, have to be intellectually curious enough to be willing to work with you to find the best solution for YOU.

Eventually, most of us become our own best specialist, because we are the one who is living with this disease 24/7/365 - no doctor will EVER have that kind of knowledge!

Thanks to the internet, most people are able to figure out a lot of stuff that in the past did require years and years of study - now we can look stuff up with a couple of keystrokes. I'm not saying that we can replace a doctor's expertise, but we certainly have access to a lot of information that wasn't available 20-30 years ago.

We are also able to talk to other people who have an intimate knowledge of what we are experiencing - and all of us know that you cannot fully appreciate what it feels like to live with this disease until you have it. Most doctors will never have MG, so they can only try to understand what we are going through.

But it's hard to REALLY understand MG if you don't have it.

After reading your post yesterday, I called my primary doctor because I am still waiting 2 months for the neuro appointment. She gave me some other names of neurologist. So when I called I asked not only how long I would have to wait for an appointment but if the doctor specialized in MG. One office would not even take the appointment when they heard MG. I guess I should be grateful they will not waste my time. I found only 1 doctor who had a MG patient and I would make #2. So I think I might go down to Jefferson Univ Hosp in Philly.

Kathie

There is one more thing you have to take into account.

If you are seronegative and have normal EMG results, the most important factor for you (in choosing your treating physician) is that this person "believes" there is such a thing as seronegative MG with a normal SFEMG.

The vast majority of the neurologists/MG experts (including those considered "best of the best") still believe that it is impossible to have MG with a normal SFEMG. ( I am saying believe because they have no scientific data to support this notion. It is based on unproven assumptions and extrapolations).

you don't want to go all the way across the country only to be told that you don't need any treatment as there is nothing physically wrong with you.

Also, many neurologists will be glad to promise you that with their treatment (and each of them have his/her favorite approach) you will go into complete remission and lead a completely normal life. The question is what have they got to base it on.

I suggest that you read this:

http://jama.jamanetwork.com/article....icleid=1105123

Another thing to think about in a doctor is finding one that weighs risk of a treatment against benefit. I have been to doctors in the past for other conditions that would happily use high risk treatment that did very little good.

So many things to think about in finding a doctor. I live rather rural, outside a small town. When I saw the posts about how few MG patients there were especially compared to the number of neurologist, I figured I was probably the only MG'er between here and Philly. I now know there is at least 1 more. Probability is there is at least 100 MG patients in Philly. It is only an hour away, so I think I will have a better experience there. Someone also recommended that I go to a University teaching hospital and Jefferson is. Wish me luck. I am still waiting to here from his office if he will give me an appointment. At least he takes my insurance.
Thanks for all the suggestion,
kathie

I could only access the first page but intriguing thought about conferences. I attend at least one 3 day legal conference every year and for lawyers i would say we get what we put in. Those who go to socialize and climb the inner social ranks do not reap the same educational value as thse who put in the time and work required, as with most things.

Regarding doctor rankings I was Discussing with colleague today how the usa today ranking seemed very similar to ranking system for lawyers called super lawyers. Although i would not personally hire all of the lawyers on super lawyers i can say ffrom personal knowledge, connections are important to being included, but almost all i have ever known that were included are extrremely competent. Whether or not they give their all to all their clients is another story. because i know some that i do not think are so good (i must disclose i am not included in south florida super lawyers which i believe is only because historically i have been more concerned with doing great work than climbing inner circles although admittedly i have to say in past several years i recognized the value of doing so and reaped benefits, fair to say before getting ill i was on fast path to inclusion.

So i am going to say there is no best of the best, especially with MG. i am very happy with my doctors competency and patient relation (albeit he is vey very busy with patients and maintaing leadership position at school). I am going to continue to be aggressively proactive so long as he continues to be receptive to same i think i am waaayyy ahead of the doctors i dealth with from fort lauderdale or miami.

Also, many neurologists will be glad to promise you that with their treatment (and each of them have his/her favorite approach) you will go into complete remission and lead a completely normal life. The question is what have they got to base it on.[/QUOTE]

I would run from a doctor that made that promise! As lawyers we are explicitly prohibited from guaranteeing outcomes, im surprised no such rules apply to doctors.

Funny i am seronegative and have negative emg (most likely becsuse no one told me not to take mestinon) and only slightly abnormal sfemg (both done within hours of taking pills) but my doctor does not seem concerned with that and we are proceeding with what i think is standard first line teatment, mestinon which is helping but not enough, prednisone which hasnt started helping yet and if no help from prednisone after 3 more weeks than we will consider next steps which i think he is thinking plasmapherisis. So all in all it seems to me it would be unreaonable for me to go to someone else for another opinion.

My impression is my doctor w more concerned with excluding other illnesses via the emg, ncs and sfemg.

I have never had a doctor guarantee a cure or even really suggest that it might work. I highly suspect that I am the only MG patient that any of my doctors has treated.

I was taught that as a veterinarian, I was not allowed to guarantee cures. I was told it would get me sued. Then I would need a good lawyer.........

Emg
 

I am worried about the EMG. I have/had RSD in my left foot. I had lots of EMGs in the past and I can tell you they are extremely painful on a limp that has RSD. I am also not sure how the RSD will effect the EMG diagnosis for MG. I hope they will do it on a different limp. What limp do the perform the EMG? With RSD they did it on both legs so they could compare the differences. On my good leg it only felt like a humming sensation, on my bad leg it felt like I had stuck my leg into an electric power generator. I do not look forward to that test but I guess they cannot do a diagnosis without it.
kathie

For me wasnt too painful except when they trried to do that muscle in neck (i dont know what it is called but it is that weirdly sensitive muscle that your older brother would always grab, paralyze you by). Anyway that was too sensitive for me to be able to stay as still as i needed to so they just moved on to another muscle.

Good luck, hopeit isnt too painful

Just like you say, there can be excellent doctors who are too busy taking care of their patients.
And there can be less good ones with very good public relations,
And there can be those who are both.

I personally think you have made the right decision.

University of Maryland has a doctor who specializes in MG and a really good surgeon who does thymectomies orthoscopically. Look at their mg webpage for info. Or pm me if you want her name.

Don't judge her based on my current condition as I was recently dx'd w/ SPS which is much rarer and harder to treat.

Argh MG Doctors….I have often wondered if they have gotten the way they are because they are forced to see so many of us due to being so few of them or they really are researchers at heart and are forced by their major institutions where the majority of them work to see patients when they would be rather working in their labs and writing journal articles. Either way, for all their “greatness” and ability to figure stuff out, I have NEVER met a single one with compassion, humor, time, ability to listen, explain their thoughts in a way that makes sense to ME and MY case specifically or who answers a portal message! I have never left any of the visits without crying all the way home. And home is always a long way away. I have the very fortunate means to have been able to visit FIVE major MG specialist/centers, Yale (Nowak), Columbia (Hirano, once and then I. Lee), MGH/Harvard (Guidon), and Hopkins (Corse). I have been told from within minutes of sitting down I do not have MG. I have been told after many tests that I have seronegative MG - maybe? I have been told by 3 of the 5 doctors that I was the first patient they ever met to have seronegative MG but positive LRP-4 antibodies and all the symptoms of MG but also negative sfEMG! These are MG docs that see 100’s of patients a year! Can you imagine? I have been given Mestinon, I have been told to not take it, I have been told to take less, I have been told I wasn’t taking enough. The one thread that runs through all of it is, THEY JUST DON’T KNOW. I think the absolute best advice I got was from the last “best of the best” (lol). She said, you know, we just can’t keep up. The tests, the treatments, the knowledge that is being thrown at us doctors is coming so fast these days, we have no time to absorb it, test it out before another new one comes along, and it isn’t like there are 10’s of thousands of you MG patients, and you are all DIFFERENT and respond so differently to treatments. And the old stuff we do know is dangerous stuff, blunt tools, like doing surgery with plastic knives. So her only advice to me was “be patient” (no pun intended) eventually the medical providers knowledge will catch up and they will know how to yield their tools to my advantage.Hopefully, you will stay safe, and relatively functioning in the meantime. Really? REALLY??? Poor doctor? And I still cried all the way home….:grouphug: