Myasthenia Gravis

Posted by rambo77 @rambo77, Feb 28 11:27am

Looking for information on how the COVID-19 Vaccine. How much less the Vaccine is with a compromised Immune system.

Hello @rambo77 Welcome to MayoClinicConnect, a place to get and give information. Everyone shares info about their journey with health issues but we don’t give medical advice because we’re not doctors. You've asked a good question that is on so many minds. I put a link to discussions on the vaccines and health issues. I hope you’ll check out the discussions. I have an autoimmune disease and I’m on steroids and I’m getting monthly chemotherapy, but my doctors said I really should get the shot. What have your doctors said?
https://connect.mayoclinic.org/group/covid-19/

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Go to Dr. Been on youtube or FB. He's excellent. Ivermectin is what I'm going to take if I get sick. For us with autoimmune issues, the vaccine is way less effective. If I get a vaccine, I will get the one manufactured by Sanofi/GSK; it's made like a flu vaccine. I'm not up for being in a clinical trial with new technology. I'm taking hyrdroxychloroquine as a preventative along with zinc 50 mg, Quercetin 300 mg, Vit C 1000 mg twice a day. If you decide you want to go the Hydroxychloroquine route or Ivermectin, you can go to speakwithanmd.com

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@becsbuddy

Hello @rambo77 Welcome to MayoClinicConnect, a place to get and give information. Everyone shares info about their journey with health issues but we don’t give medical advice because we’re not doctors. You've asked a good question that is on so many minds. I put a link to discussions on the vaccines and health issues. I hope you’ll check out the discussions. I have an autoimmune disease and I’m on steroids and I’m getting monthly chemotherapy, but my doctors said I really should get the shot. What have your doctors said?
https://connect.mayoclinic.org/group/covid-19/

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Thanks for the reply and my Doctors also said to get the Vaccines . Thanks again good luck to you .

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Thanks for the information, however I know doctors tell you to get the Vaccines. What they don't tell you if you take immune weaking meds how will that affect the Vaccines. Thanks very much.

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@rambo77

Thanks for the reply and my Doctors also said to get the Vaccines . Thanks again good luck to you .

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Unfortunately, doctors have been told to 'sell' the vaccine. Some are getting incentivized for signing people up for the vaccine. Also, Dr. Dreisher, Dr. Cahill from Ireland, and others have explained about the vaccines, coronaviruses, etc. I will not be getting any new technology for an experiment.

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@rambo77

Thanks for the information, however I know doctors tell you to get the Vaccines. What they don't tell you if you take immune weaking meds how will that affect the Vaccines. Thanks very much.

Jump to this post

Yes, people like me with a comprised immune system will not have robust efficacy of any vaccine. It will be around in the 50% range from what I've read from immunologists. If I get any vaccine, it will be the one made by sanofi/gsk that is made like the flu vaccine. I'm not up for being a guinea pig.

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@becsbuddy

Hello @rambo77 Welcome to MayoClinicConnect, a place to get and give information. Everyone shares info about their journey with health issues but we don’t give medical advice because we’re not doctors. You've asked a good question that is on so many minds. I put a link to discussions on the vaccines and health issues. I hope you’ll check out the discussions. I have an autoimmune disease and I’m on steroids and I’m getting monthly chemotherapy, but my doctors said I really should get the shot. What have your doctors said?
https://connect.mayoclinic.org/group/covid-19/

Jump to this post

Thanks Mentor for the very nice letter and my doctor said to take the Cellecpt however I have done wonderful for 4 years and i have now cut out all MG meds as about two weeks ago, and I hope I am in Remmison. Thanks again and this is a great site Gilbert Brown in Tennessee

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This doesn't answer your question, or maybe it does. I have Myasthenia Gravis, and I was just asked to participate in an antibody study at the NIH, called SARS-COV2 Pandemic Serosurvey in a Rare Disease Population Research Study. I'm excited to participate, I'm to take a blood sample next week, and return it.

WHY IS THIS STUDY BEING DONE?
We are conducting this study to assist in grasping the impact of the newly emerged SARS-COV2 (COVID-19) virus as it is critical to gain a rapid understanding of exposure and immunity in the general population.

We want to identify if individuals with rare diseases were exposed to this virus in recent months, so we can further understand how those with rare diseases are affected.

We can investigate this by analyzing blood samples to see if we can detect antibodies to the SARS-COV2 (COVID-19) virus.

WHAT WILL HAPPEN DURING THE STUDY?
If you or your family member are less than 90 years old, have a rare disease and participated in the study “Impact of COVID-19 on People Living with Rare Disease and their Families” your participation will include:

· An over-the-phone consent.

· An electronic questionnaire (This will ask demographic and general health questions)

· One at-home blood collection. You will perform a finger prick on yourself or your child and then collect your own blood to send to us per our instruction. The collection will be less than ¼ of a teaspoon of blood.

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I was diagnosed with myasthenia based on symptoms and response to mestinon. My nerve study and labs were normal but I have eyelid drooping and muscle weakness, extreme generalized fatigue. I also have a non functioning pituitary tumor that I've been told can't cause symptoms. So……just looking to talk/opinions/suggestions/comments?????…….Have my initial consult at Mayo in Sept. THANKS IN ADVANCE!

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@skhollandmt

I was diagnosed with myasthenia based on symptoms and response to mestinon. My nerve study and labs were normal but I have eyelid drooping and muscle weakness, extreme generalized fatigue. I also have a non functioning pituitary tumor that I've been told can't cause symptoms. So……just looking to talk/opinions/suggestions/comments?????…….Have my initial consult at Mayo in Sept. THANKS IN ADVANCE!

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@skhollandmt you will notice that I moved your post into an existing discussion on Myasthenia Gravis. As well, here is another discussion that could also be of interest on the same topic, if you feel this may be a better thread to share your post:
https://connect.mayoclinic.org/discussion/hi-everyone-let-me-begin-by-telling-you-some-of-my-story/
It is great to hear that you have a scheduled consult at Mayo Clinic in September and it is great that you are doing so much to plan for it. What type of information would be most helpful to start?

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@amandajro

@skhollandmt you will notice that I moved your post into an existing discussion on Myasthenia Gravis. As well, here is another discussion that could also be of interest on the same topic, if you feel this may be a better thread to share your post:
https://connect.mayoclinic.org/discussion/hi-everyone-let-me-begin-by-telling-you-some-of-my-story/
It is great to hear that you have a scheduled consult at Mayo Clinic in September and it is great that you are doing so much to plan for it. What type of information would be most helpful to start?

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I'm struggling to believe it can be myasthenia with negative blood tests and negative EMG's. But I do know not all diseases are "proven" by positive tests,are sometimes are just based on symptoms and medication result. I'm wondering if anyone else has had similiar experience? Also, what type of response do others have with mestinon. I've noticed I am very more noticeably depressed on days I don't take it but that seems weird…..because I can't find anywhere that it works on mood. It also seems that I have almost a "build up" response where I feel better after staying consistently on it for days…..but I try just to take it on days I work because there again I question the diagnosis and then feel stupid for taking a medication when I question the diagnosis. BUT on the other hand it is the ONLY thing that gets me through super busy work days!
So……….anyone out there diagnosised despite negative blood/EMG studies? And any comments on response to mestinon? Any comments of what else it could be besides myasthenia but still responds to mestinon? I'm so tired….and so tired of feeling stupid/crazy because I feel so yucky but don't have positive tests!
Thanks,
Stephanie

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@becsbuddy

Hello @rambo77 Welcome to MayoClinicConnect, a place to get and give information. Everyone shares info about their journey with health issues but we don’t give medical advice because we’re not doctors. You've asked a good question that is on so many minds. I put a link to discussions on the vaccines and health issues. I hope you’ll check out the discussions. I have an autoimmune disease and I’m on steroids and I’m getting monthly chemotherapy, but my doctors said I really should get the shot. What have your doctors said?
https://connect.mayoclinic.org/group/covid-19/

Jump to this post

Thanks for the info and my Doc. said to get the shot and I did get both shots and the last shot was in March so far no side effects that i know about . I also have severe Emphysema and my immune system is compromised and have to be care full of sick people all the time. Sure hope every thing you are doing works out for the best. Thanks again for the post.

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