Well I think you all may have helped me figure out part of my problem. I don't have a regular neuro! The eye Dr. is the one who set up my appt. with the Neuro Optho. I saw him once a month ago. While I was there he didn't say anything about me needing another Neuro! He gave me the lab form for the antibody test and scheduled me with the MG specialist for the EMG. Ok it sounds like I need to get a regular neuro. Actually I have already started looking into that even before reading this. I looked on the MG Foundation website and found another group of Neuros here in KC who specialize in MG. I have called my insurance and they are in my plan. I am going to call them Mon. and see about setting up a consult.

Ally YES my EMG was done by the very same woman!!! I was not at all impressed with her bedside manner. Honestly that is why I avoid KU at all costs. I used to see a Hematologist there for my blood disorder and switched to a new one who I LOVE! I see him 4 times a year but he is always so upbeat and tells me to go live my life and I'll be fine. That is what I want out of a Neuro too. I don't want to be treated like a science experiment! I am so shocked that Dr. Whittaker asked you if he should write the scrip or did you want your reg. Neuro to. Did he tell you before that you needed a regular Neuro? I feel like I have not gotten any info out of him at all. He said to me "we will let you know what we are doing as we proceed" I really don't like that because I am one of those people that wants to know everything ahead of time not at the last minute. Has he mentioned anything to you about a CT scan to check your Thymus? That has ever been mentioned to me at all. If it wasn't for the eye Dr. telling me that the Thymus could be involved and all of you I still wouldn't know that.

Annie yes I have been putting cold compresses on my face. It does help. Today the pain is gone I am just so swollen, bruised and sore. You are right that the stress isn't helping me at all!!! Thanks so much to all of you for your input. I am going to try and relax this weekend and make the call Mon. to the other Neuros. I hope I didn't forget to answer some of your questions. If I did I apologize.
Kendra

Kendra,

I have a regular neuro because of my migraines. I've been receiving treatment for migraines for the last 5 years. It just so happens that Dr. Whitaker knows my regular neuro who is Dr. Dana Wingarner from the Mid-America Neuroscience Institute in KC, MO and Lenexa. I really like him and consider him the best one I have had since this whole migraine and MG thing got started.

I do see Dr. Whitaker again in January and am supposed to call his office every two weeks to report how I am doing. I see my regular neuro in two weeks and have a lot of questions for him when I do.

I do hope that you can find a neuro that you will really like and be able to trust.

Shannon

Shannon,
First of all I am so sorry for calling you Ally! I think I am still in a brain fog from yesterday. Thanks for the info. I was beginning to think I was supposed to have found a reg neuro on my own. I am calling St. Lukes Mon. to schedule an appt with one of their neuros. They were so nice on the phone and specialize in MG. Hopefully I can get in to see them soon! I'm sure it will be before Nov.24 when I'm scheduled with Whittaker again. If they have a Nuero Optho I may just switch over to St Lukes entirely.

How is the Mestinon working for you? Hopefully you are feeling much better.
Kendra

Kendra
So sorry you had to endure that.....you can rest assurred that we all know exactly how you feel...and it isn't fun but hopefully that will be the last of those tests.

You are definitely on the right track calling the new Neuro...I know that everyone here on this forum agrees that ...WE...ourselves individually have to be our own health advocates. We have an individual right to direct our own health care.......I know this sounds weird but a patient has the right to see any doctor they choose and....if they feel that the care is not there...then you have the right to do otherwise... Alot of the doc's want to be absolutely sure of a dx....and sometimes I try to put the shoe on the other foot and remember that they have to follow thru and be very sure of things before giving meds....you know law suits and such...doc's just have to be careful these days.

But, with all that said...I know exactly where you are right now. When I went to my Neuro she first did the regular exam...then I had to wait a week until she did the nerve studies....it seemed like a lifetime....I was so fatigued...couldn't walk....shortness of breath was beyond anything...and then when I went back for the nerve studies....I prayed the whole time that she would give me the meds.....I so wanted my life back. The neuro herself did the nerve studies......finished them....pushed back her chair and said "Well it definitely proves my dx, it is positive for mg" She knew immediately by reading the test herself. She immediately gave me the rx and God gave me my life back.

Sounds like you are on the right track with St Lukes.....it is your right to choose your own path for healthcare....Hang in there....rest all weekend and don't overdo it. Let us know how it goes.

JJ

Kendra.

You have the right to get a copy of every test result - - be it a blood test or a neuro or a CT or an MRI. I got tired of every different doc having 'a peice of info' and began my own med file.

My second neuro (fired the first!) was impressed that I had dropped off copies of everything ahead of time and we had a terrific first appointment! The other advantage to having your test results (and in some cases doctor's notes) is that you can research for yourself on the internet (and with the experienced folks here). This allows you to ask good questions and frankly, to access the new doctor. Is he/she willing to discuss - - or just dispatch the patient.

Anyway, I have made it a practice over the past few years to NEVER leave the doctor's office without my hardcopy of the test results from every test they ordered. Sometimes you don't exactly 'ask' - but rather you 'inform'....."I'd like to get a hardcopy of my test results." They can not legally refuse - - they are yours, you paid for them.

Hope this helps!
Sue

Kendra, I am glad you are feeling better. I had a hard time reading the posts here just remembering my pain and my fear. That test was definitely painful for me...I was hoping that I was the exception. I hope you get a diagnosis soon.

for some reason that is not quite clear to me, the management of MG patients worlwide seems to be quite dissorganized, and very lay-back (from the physicians side, not the patients).

it makes perfect sense not to start mestinon, in a patient who is relatively stable before doing an EMG, as it may alter the results, but why would you not give it right after it?

mestinon is a relatively safe medication, with very little known long-term side effcts, it does not lead to addiction, so why withold it, in a patient in which the diagnosis does not seem to be questionable? further more, the response to mestinon can lend further support to the diagnosis.

what is the sense in adding needless stress and agitation, from having to wait for relief? it's like you would tell a patient with a headache- we will give you tylenol next month, so please wait patiently. or a patient with relatively mild asthma- we can give you a steroid and ventolin inhaler, but only after you have a much more severe attack that will require hospitalization.

and then they are suprised that their patients are anxious and demanding, and suggest they seek emotional support. does that make sense?

alice

Alice, No, it doesn't make sense the way you put it. But in this case it actually does. The neurologist who did the SFEMG/RNS test isn't her "regular" neurologist and "can't" prescribe to her. The neuro-ophthalmologist wouldn't follow her care on a regular basis because he only evaluates the ocular involvement of MG. As she said above, she needs a "regular" neurologist who can prescribe the meds and follow her on an on-going basis. I know, some N-O's do prescribe Mestinon but it's up to each one to make that decision.

I also think doctors are always thinking in terms of lawsuits these days and don't want to make a misstep. No, that's not fair to Kendra one little bit. Someone should have spoken up and asked her if she had a regular neuro. One of these doctors could have called and made sure she had meds right away because, clearly, she needs help right away.

Kendra, I hope you will get some meds soon. No one should have to suffer along with MG without them.

Annie

Annie,

you say-"I also think doctors are always thinking in terms of lawsuits" .

not always, but way too much.

and it's a shame, because how can you be your patient's true partner, if you envision them as your potential rival in court?

and actually more and more physicians and hospital managments begin to realize that honestly discussing errors ( which are unfortunately inevitalbe as long as medicine is practiced by normal human beings and not gods), that were done with patients and their families, does not lead to lawsuits, but quite the opposite.

and there is an excellent paper on this topic in the NEJM as well as other medical journals.

and even if their concern is lawsuits, wouldn't witholding nesacary treatment be as bad, as giving one needlessly?

so many patients are given mestinon and told that the effect is " non-specific" so obviously you don't have to be sure beyond any reasonable doubt that a patient has MG ,before perscribing it.


and you are also referring in your post to another major problem of modern medicine- fragmentation. the patient is no longer a person, but pieces of a puzzle- that no one is really responsible to put together.

like you put it- The neurologist who did the SFEMG/RNS test isn't her "regular" neurologist and "can't" prescribe to her. The neuro-ophthalmologist wouldn't follow her care on a regular basis because he only evaluates the ocular involvement of MG.

you don't even have subspecialties any more. there is a neurologist that only deals with EMGs, another that only deals with the eyes. and yet another that is an expert in parkinson, but knows zilch about MG. there are no ophtalmologists any more- there are cornea, retina, neuro- specialists.

all this leads to over-reliance on diagnostic tests, and the loss of common sense, as was the name of an article I have recently seen in the american journal of medicine- common sense is not so common any more.

and yes, Kendra, like every other patient in the world deserves to recieve proper treatment in a timely manner.

although, you are right that one has to adjust to the world they live in, even if is far from ideal, and play the game by the rules. just like I myself did.

but, I also think that physicians and patients should join their forces in changing this ( although obviously it will not happen in one day)- because both will benefit.

alice

Alice - I agree with your post. That's why I believe it is important to get/keep copies of all your test results. With the fragmentation that you reference, the only common denominator sometimes (with or without common sense ...lol) is the patient!

I have been thanked more than once for providing a doc a copy of all my test results from various specialists previously seen. At the very least, it seems to save time.

Sue