Hi Eve, you have the right attitude that is the medication works the rest is just diagnostics. I am serum positive (modestly) but my EMG muscle tests were not conclusive. My neurologist is of the attitude that if I have the symptoms and I respond to Mestinon that I have MG.

I think it's great that they are looking at the Musk antibodies as well. The trial of Mestinon should be a good indicator of MG or one of the subtypes such as LEMS

Hang in there, the road to a diagnosis can be a bit confusing and frustrating.

Take care

Joe

I'm also antibody negative (or, as I understand it, the antibodies are there but not in high enough levels to be 100% conclusive) and have now been through 2 EMGs all over my left side (not an experience I ever hope to repeat!) that didn't show anything irregular, and my MuSK antibodies are negative, but because I responded so well to Mestinon, my neurologist feels confident that MG is the culprit.

I certainly empathize with your frustration about this! It's so tough to be in the not-knowing-for-sure boat. I hope the Mestinon trial clears things up for you, and that you get some relief for your symptoms. It sounds like you've got a good doctor who's going to be persistent in finding what's wrong, and that, I think, is key.

Take good care, and take it easy after that EMG!

Hi Eve,
Your description of your Neuro appointment, and - all the testing results?
It pretty much sounds like my own experiences, back when I was first going through diagnostic testing for MG.
And in the 2-plus years, that I have been a part of this wonderful Dailystrength MG group?
There have been countless other Snowflakes, who have also written postings, just like yours. (Imagine how many postings like that - have been seen by long-time DS members.)
It's particularly frustrating for people like yourself, who test sero-negative and pass their Nerve Conduction Studies (I also ''passed'' my Nerve Conduction Studies, even though I was strongly sero-positive.)
It sounds like you think your Neuro is okay.
It's great that you will be getting a trial of Mestinon. It works for most people.
(It did not, for me.)
And your Neuro will also be conducting some more tests - that's great.
Don't feel bad, about the appointment today.
Although you had some negative results?
Overall. it sounds like it was a positive appointment.
Meaning: your Neuro is continuing with more diagnsotic tests for you, rather than just dismissing you out of hand, which happens to so many of us, world-wide.
If not MG? Then perhaps Lambert-Eaton? As we sometimes see here (LEMS).
Hang in there!
- Ross

Hi Eve,

Thats a surprise and not a surprise all at the same time.

It sounds like you are now more sure about your symptoms but the diagnostic journey is just going to take a little bit longer than you (and everyone else) expected. Many have retaken the tests before getting positive readings as well.

I had the same. My SFEMG practitioner was more upset than I was that my test came out negative! (Had that same lab in Oxford for the MuSK test. The ACHR took 3 months for results to arrive its a wonder the blood sample did not evaporate!)

The Mestinon did end up working for me.

You didnt get your official diagnosis quite yet but you have a lot of support here and it sounds like you have good support from a good neuro.......

.....And those are worth their weight in pure gold.


A BIG hug,

Calmday XXXXX

Like Ross said, your doctor did not dismiss you as so many do when you have negative tests. When I first got tested, every single test was negative. I asked to try mestinon, and at first could not tell for sure if it was helping or it was wishful thinking on my part.
Later when my symptoms got much worse, the mestinon definitely helped, but still not definite diagnosis. When I was in the hospital in January they retested and the LEMS test was positive.
Even though you don't yet have a diagnosis, it sounds like you have found a doctor who is going to try to get you one and that is golden.

I agree with the others, it sounds like you have a neuro that is considering everything.

I am seronegative. All of my tests were negative, except the SFEMG and it showed borderline results because (maybe) I had been on treatment too long. My neuro was convinced that I had MG because of my response to mestinon, but my GP kept insisting that I have the tests at a testing facility.

It takes awhile to get a firm DX. Let us know how the mestinon works for you.

Barbel

One thing that can happen to people in our predicament is that an assumption can be made that we have "mild" Mysthenia and that "mild" Myasthenia needs less aggressive treatment. The trouble with those often held assumptions among neuro's is that there is no correlation between level of antibodies and severity of disease and that one can lose one's health pretty quickly without adequate treatment. My second neuro kept thinking I should be able to get my MG under control with 35 mg prednisone, which is laughable to me in retrospect, but what is not laughable is how sick I had to be one to prove I was not receiving adequate treatment. I guess I am saying to be vigilant about getting sufficient treatment.

Eve,
Your neuro sounds like good news, even with the negative testing. I will be waiting to hear how the Mestinon works. Except for one pair out of 98 pairs, my SFEMG was negative and all other tests were negative (or normal). I responded dramatically to Mestinon, my father and aunt had MG, and so do I.

Only those of us seronegative shout "hooray" about our diagnosis, we understand how important that is! b.

Hi , if your Doc put you on mestinon he thinks you have MG. I hope it works and gives you relief, Charlie

I've have two Nerve Studies and Single Fiber EMGs and they have been negative both times. One in 08 and one this year. Blood test stays positive each and everytime. I guess I am considered mild, but it's hard for doctors to tell me something I don't have when I continue to have high antibodies. Hang in there, I'm sure there is more to MG then what we know about. My personal opinion, I think I'm in pretty decent shape and I used to life weights, a lot. I think it takes more for my nerves to fatigue than someone that is having more symptoms. That's my personal feeling. Just a question, does your facial muscles ever have a weird sensation? Not necessarily numb, but like you have a facial mask on? I get this all the time from my cheeks, around my mouth, and down to my chin. I was told this isn't normal for MG back in 08 but I have been on other forums where MGers have complained of this.

Eve,
Thanks for sharing your update. I've been wondering about you.
I can relate to your story all too well. My MuSK and ACHR tests were negative as was the repetitive nerve testing. I had very visible face/eye drooping and weakness. EMG did reveal myopathy, so that was helpful. I'm on Mestinon even though MG tests are negative thus far. The mestinon worked great at first, but works marginally now.
Still, I welcome any help I can get. Thank you, neuro!

You have a compassionate and persistent neuro and I so happy to hear that. Sometimes, it takes time for tests to come back positive and other sometimes it's just seronegative or something else.

Hope the mestinon makes a difference for you!
Hugs,
Carly

Thank you for the update. It is so upsetting when our facial muscles do not work properly, and the Doctors cannot tell us why. Hope you get some answers soon, and please keep us updated.

I'm so sorry that you are frustrated and confused. We spend a lot of our time in that situation.

In our office/practice we have seen may variations of positive antibodies and negative EMG and the other way around. Last week we had a patient with a very rare situation. She was positive for all MG antibodies except for MUSK but her EMG was surprisingly normal. We've had multiple patients with negative antibodies who's EMG was positive (such as my own).

There are so many variables that contribute to the results of an EMG. You level of fatigue prior to the test, during and after the activation of the muscle for an extended time. Not to mention technical issues with the computer and any parts associated with the study, interference from other electronic devices, etc.

I would ask your doctor how many EMG studies he has performed also. Not to discount his background or anything but it's always possible that it could be performed incorrectly and/or misinterpreted. I doubt that is the case but it's worth asking about.

I think that it's awesome that the doctor admitted that he was frustrated too. That is a form of validation that is hard to get from a doctor or anyone else. Good luck to you. I hope that you get answers very soon.
I hope you feel better soon. Hugs and aloha.
Angie

I'm sorry you didn't get a definitive answer at your appointment! That sounds frustrating. I haven't had an EMG so I don't really know how they work, but I'm glad your doc is still testing and gave you a prescription for Mestinon, that's good news! I hope it makes you feel better.

Hi everyone - thank you for all of your lovely replies! I feel little less bewildered by it all today and like you said - I am very grateful and very lucky to have a well educated Neuro who actually seems to want to help me!! I think it helps that he had a research post in Oxford actually involved in Myasthenia Research and perhaps that is why he is not phased by the negative tests?? Whatever the reason - I am just glad to have found him!

I would still like to have an answer and be able to accept and understand what is going on, but if that is not meant to be then I am just grateful to have a Dr who isn't trying to dismiss me or make me fight every step of the way!

I just somehow feel like I've failed? I don't know why? Maybe because Neuro #1 mad me feel like it was in my head, my fault?? A Positive MuSK antibody test would be a huge relief but more importantly I PRAY the Mestinon does it's magic when my Gp gets the letter and prescribes it.....I am becoming very good at the waiting game! lol!!

Back to you guys - thanks again to you all for helping me work through this all in my head!

Joe, you are such a lovely man and all of your posts echo that!

SeattleWriter - I am sorry for your struggle but thank you for posting and showing me that I am not alone - I am glad you are being well looked after :)

Ross - thank you too for letting me know I am not alone and for the encouragement :) I hope the Mestinon works too...it sounds like you had a really rough time of it!

Calmday :) - I feel my Neuro was as surprised and upset as I was too about the negative test! I hope you are doing ok, thank you for your support and the HUG...I needed it! :)

Limpnoodle - Thank you! I am sorry you had a rough ride but thank you for giving me hope that I may get an answer as you did - I am so pleased you finally got there :)

Barbel - you are so good to me, always there on my journals and posts helping and supporting me - Thank you :)

Elinora - Thank you, I see the huge difference in your health since I joined early this year, I really hope you get some answers soon, Thank you for still taking the time to reply despite how poorly you are - you are always a huge comfort :)

B :) Thank you as always :) If I get the diagnosis you will be hearing one very loud "Hooray!" coming from me!! Thank you for understanding.

Hi Strizzlow! - I feel like me and you are on the same roller-coaster! And what makes yours worse is you have the antibodies!! I don't know about the mask feeling but if I get very tired/fatigued I feel as though my facial muscles will "pull" - does that make any sense??!

Carly :) thank you for your lovely post, and for thinking of me!! I am so glad you have a nice Neuro too!! We are the lucky ones...in some ways! I hope the mestinon works too - thank you so much :)

Tim62 - It sounds like you understand how horrible the facial droop is!! I hope you are well and looked after by your Doctors :)

Aloha Angie! I was hoping you'd reply as I know this is your field!! Thank You for your advice and for explaining it a little more to me :) You are a valuable person to have here with your knowledge :)

Vieve - Thank you so much for your reply and for your support, I really appreciate it :)

Thanks again everyone - I am lucky to have found my Neuro but consider myself just as lucky to have found you all :) x