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Negative SFEMG but still have MG?

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Old 11-10-2009, 07:12 AM   #31
neutro
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Hi Rachel,
Not so well…I'm still fighting against that pneumonia shot which sent me back about two years ago: arm, jaw, neck muscle weakness reappeared, somewhat alleviated by an upped intake of Mestinon, 8 x 60 mg per, one every two hours.
I really feel when I need it, that's how I come up with that scheme. This means that my production of antibodies has been drastically increased, about double that it was 1.5 month ago.
I'm so sorry for you that you haven't received any answer from France (yet…). If you want to send them a reminder and if I could help, you have my e-mail…
And from the bristish side, what is the outlook?
Take care,
Maurice.
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Old 11-10-2009, 11:09 AM   #32
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Default Hi Maurice

So sorry to hear that you aren't doing too well. I hope that things start to turn around for you soon.

I heard from France but they suggested I see someone in the UK. I have persued their suggestion as its someone the professor has worked with and I have an appointment in late December. So Im crossing my fingers for that one.

Thank you so much for all your help

Love
Rach
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neutro (11-11-2009)
Old 11-10-2009, 05:55 PM   #33
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Hi Rach,

I will be crossing my fingers also for a good outcome!!!!
Hope you are doing ok
Kate
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Old 11-10-2009, 06:22 PM   #34
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Rach, This might just be the one this time. At least I'll be keeping good thoughts that it is. You have been through so much and have been so brave. Hang in there just a little longer...you will get the help you need.


Maurice, I'm sorry to hear that the pneumonia shot caused you to have so much trouble. I hope you get back to feeling better soon. When I was in the hospital they offered to give me both the regular flu shot and the pneumonia shot, which I declined. Had I felt better I would have accepted the pneumonia shot, but perhaps it's just as well I didn't. I had a violent reaction to the regular flu shot (my first one) about 18 years or so ago, so I haven't had another one. Now with having the MG and such sensitivities to so many meds, I'm even more leary about getting the regular or the N1H1. I'm just going to be very careful and hope for the best. Feel better


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Pat
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Old 06-27-2017, 07:39 AM   #35
Olle
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Quote:
Originally Posted by alice md View Post
Jana,

I wish it was so simple, there is an excellent review by Michael Ben-Atar, which goes over all the tests that are used for the diagnosis of MG.

there is also another study that shows that in patients with seronegative MG it is not that rare to have a normal SFEMG.

the problem is that many neuromuscular specialists do not accept those studies, or have all kinds of explanations as to why they have such results, and think that it is impossible to have a normal SFMEG in a muscle that is weak by myasthenia.

this is one of the "windmills" I am trying to fight. and it is not going to happen in one day, if at all.

my suggestion to your friend it to find a more open minded neurologist, that does not think that this is an "infalable" test.

alice

Dear Alice,
I know this is a really old post, but I'm desperate for help. You write:

"there is also another study that shows that in patients with seronegative MG it is not that rare to have a normal SFEMG"

Do you know where I can find this? I have been treated for (seronegative) MG the past year, but now, after my third negative SF-EMG, my dr has changed my diagnose from MG to unclear muscular weakness. He now believes it is functional, something I can physically train to become better. I have a feeling he is wrong.

I have been on Mestinon, Prednosolone, and immunosuppression (Prograf) the past year. It has helped me gain so much strength. This makes be believe it could be MG even if my dr doesn't think so. So I need to read and find out as much as I can about if it is possible to have seronegative MG AND negative SF-EMG. The SF-EMG was made when I was really, really weak, from not taking mestinon for 22 hours. And the dr who performed it is a specialist who has worked with those tests for many years.

I am so thankful for any response!
Kind regards from Europe
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Old 06-27-2017, 08:44 AM   #36
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Hi, Olle. Welcome to the forum!

Alice hasn't been her for a while. But I believe I can help.

When someone is immunosuppressed, the signs of MG will be reduced or disappear. There are studies, one done by the inventor of the SFEMG (Erik Stalberg), that clearly show that the SFEMG becomes normal while on Mestinon and immunosuppressants.

SFEMG.Info

The studies I found are in book form. I can't find the articles online. You could try to search PubMed. Or you could contact Erik Stalberg and ask him! He might reply!

Any doctor should understand this basic principle. The whole point of suppressing the immune system is for the disease state to be suppressed! Therefore, the signs of that disease (clinical and tests) are equally effected.

I'm sorry for your struggles and that they are now acting as though you're fine. When someone has cancer, has chemo and/or surgery, and the signs of cancer go away, do doctors then say that the patient never had cancer?!!! If someone has pneumonia and take an antibiotic and there are no signs in 2 weeks, does that mean they weren't sick? If someone has seasonal allergies and takes Singulair or Benadryl and the symptoms go away, does that mean they don't have an allergic response any longer?

This is a DANGEROUS way to think. If they take you off of meds and put you on physical therapy, for example, you could go into a MG crisis.

Did you have positive antibodies? How did they diagnose you? And if you didn't have MG, how do they explain suppressing your immune system for months (longer?) and subjecting you to the possibility of cancer and subjecting themselves to the possibility of a lawsuit! They are being rather hypocritical.

Are you symptom-free? If so, your doctors should consider you drug-induced remission. Please, don't worry! Sometimes you just need to talk their language in order for them to stop being, well, just plain ignorant.


Annie

Last edited by AnnieB3; 06-27-2017 at 12:17 PM.
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Old 01-25-2018, 04:09 PM   #37
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Quote:
Originally Posted by AnnieB3 View Post
Hi, Olle. Welcome to the forum!

Alice hasn't been her for a while. But I believe I can help.

When someone is immunosuppressed, the signs of MG will be reduced or disappear. There are studies, one done by the inventor of the SFEMG (Erik Stalberg), that clearly show that the SFEMG becomes normal while on Mestinon and immunosuppressants.


The studies I found are in book form. I can't find the articles online. You could try to search PubMed. Or you could contact Erik Stalberg and ask him! He might reply!

Any doctor should understand this basic principle. The whole point of suppressing the immune system is for the disease state to be suppressed! Therefore, the signs of that disease (clinical and tests) are equally effected.

I'm sorry for your struggles and that they are now acting as though you're fine. When someone has cancer, has chemo and/or surgery, and the signs of cancer go away, do doctors then say that the patient never had cancer?!!! If someone has pneumonia and take an antibiotic and there are no signs in 2 weeks, does that mean they weren't sick? If someone has seasonal allergies and takes Singulair or Benadryl and the symptoms go away, does that mean they don't have an allergic response any longer?

This is a DANGEROUS way to think. If they take you off of meds and put you on physical therapy, for example, you could go into a MG crisis.

Did you have positive antibodies? How did they diagnose you? And if you didn't have MG, how do they explain suppressing your immune system for months (longer?) and subjecting you to the possibility of cancer and subjecting themselves to the possibility of a lawsuit! They are being rather hypocritical.

Are you symptom-free? If so, your doctors should consider you drug-induced remission. Please, don't worry! Sometimes you just need to talk their language in order for them to stop being, well, just plain ignorant.


Annie

Dear Annie,
6 months later, thank you so much for your reply. Im very happy to tell you that I got my diagnosis back by my new neurologist. I saw the top MG specialist in our country and she told me right away that I had been extremely mistreated at my previous neuro and that I do have MG... So, Im back on my medicines, happier than ever waking up to take the pills in the morning. Im just so extremely glad to simply be alive, dont know how I would have survived if I hadnt got the right help.
Just wanted to share the good news. Changing doctors, doing resrearch and being persistant has saved my life and I encourage everyone in my situation to do the same.
Wish you all the best!
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Old 01-26-2018, 08:50 AM   #38
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Oh I'm so happy for you. I have given the same advice to my sisters. A lot of neuros are not as smart as they think.
Mike
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