Myasthenia Gravis and COVID

Posted by rambo77 @rambo77, Feb 28, 2021

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

Interested in more discussions like this? Go to the Autoimmune Diseases group.

@skhollandmt

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

Jump to this post

Stephanie, allow me to tag fellow members @rambo77 @Erinmfs @ellen307 @pdietrich @lynnes @chorba and others who can share more about myasthenia gravis and potential their experiences with negative blood test, response to Mestinon (Pyridostigmine).

How are you managing the fatigue?

REPLY
@colleenyoung

Stephanie, allow me to tag fellow members @rambo77 @Erinmfs @ellen307 @pdietrich @lynnes @chorba and others who can share more about myasthenia gravis and potential their experiences with negative blood test, response to Mestinon (Pyridostigmine).

How are you managing the fatigue?

Jump to this post

Hi,

I recently started cutting my Mestinon pills in quarters, and I only take 1/4th of a pill. This has helped with the stomach cramping. I've had negative blood tests and EMG studies, but my eye still droops and I always have double vision.

I took the covid19 vaciine with zero issues, but I don't take cellcept or azathioprine. I don't do IVig.

REPLY
@colleenyoung

Stephanie, allow me to tag fellow members @rambo77 @Erinmfs @ellen307 @pdietrich @lynnes @chorba and others who can share more about myasthenia gravis and potential their experiences with negative blood test, response to Mestinon (Pyridostigmine).

How are you managing the fatigue?

Jump to this post

Thanks Colleen. I am not managing the fatigue well at all. Since I've just started using the mestinon within the past several months, I have been able to "titrate" it to enough to get me through work without enough to give me side effects like nausea and headache. I actually….for the first time ever in my life…..had to quit a job (a second one) without giving 2 weeks notice (due to extreme fatigue) I quite literally couldn't get up and going to make my shift.

My current full time employer knows I'm having problems but there's not much I can do except use the mestinon and muddle through the day. I have completely stopped doing anything on my days off except for resting. The depression is absolutely killing me with all this. It's so physically hard to get up and go that I have no desire to try to get out and do any activities.

My appointments are coming up in September with Mayo and I have hope for a definite diagnosis and treatment. In addition, I hope to schedule surgery to remove my pituitary macroadenoma. Between having both myasthenia and the macroadenoma I wonder which causes what symptoms. I'm holding on by a thread and waiting for time to pass until my appointments!

I would appreciate any comments/suggestions/advice from the group!

Steph

REPLY
@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?

Jump to this post

How many people out there are seronegative and EMG negative? Am I just crazy or does this actually happen? What symptoms does everyone have? What do you do to help besides mestinon? Does anyone else notice mestinon helping with mood?

Any feedback/comments/suggestions/advice…..just reaching out……struggling to get through this

Thanks
Steph

REPLY

I am seronegative and EMG negative too, maybe I forgot to say that. And yes, I believe Mestinon affects mood, but doctors won't admit to it. I get plenty of rest and take vitamins. I think that helps.

REPLY
@Erinmfs

I am seronegative and EMG negative too, maybe I forgot to say that. And yes, I believe Mestinon affects mood, but doctors won't admit to it. I get plenty of rest and take vitamins. I think that helps.

Jump to this post

Thank you for commenting. It took about 4 years to get a diagnosis. So I still question it and myself some days! But my symptoms fit for sure. I take vitamin D, B, and my doc recommended magnesium too. The getting rest part is tough! It's hard to explain to someone how MG fatigue isn't something you can just "nap away" The unbelievable, bone crushing sense of fatigue. I stopped walking even because I'd get part way and feel I wouldn't be able to get back! The mestinon is a huge help or I don't think I would be able to continue working for sure. On days I don't take it though I've noticed more depression that is debilitating on it's own.
Thanks for commenting!
Steph

REPLY
@skhollandmt

Thank you for commenting. It took about 4 years to get a diagnosis. So I still question it and myself some days! But my symptoms fit for sure. I take vitamin D, B, and my doc recommended magnesium too. The getting rest part is tough! It's hard to explain to someone how MG fatigue isn't something you can just "nap away" The unbelievable, bone crushing sense of fatigue. I stopped walking even because I'd get part way and feel I wouldn't be able to get back! The mestinon is a huge help or I don't think I would be able to continue working for sure. On days I don't take it though I've noticed more depression that is debilitating on it's own.
Thanks for commenting!
Steph

Jump to this post

Steph, is your September appointment with Mayo Clinic?

@Erinmfs, What tips would you offer @skhollandmt as she prepares for her appointment?

REPLY
@colleenyoung

Steph, is your September appointment with Mayo Clinic?

@Erinmfs, What tips would you offer @skhollandmt as she prepares for her appointment?

Jump to this post

Yes they are with Mayo. Because I need the macroadenoma removed I see endocrinology, neurosurgery, neuromuscular (because of the MG diagnosis), have labs, EMG's, and MRI! Very thorough evaluation for sure!

REPLY
@colleenyoung

Steph, is your September appointment with Mayo Clinic?

@Erinmfs, What tips would you offer @skhollandmt as she prepares for her appointment?

Jump to this post

My MG was definatively diagnosed with a tensilon test with Mayo's neuro opthamology. I was seronegative and EMG negative at the time, but my eye was drooping. The tensilon injection opened my eye right up and I was diagnosed MG. I had a 4 day workup when I was first diagnosed. Go in with a positive attitude and let them test you for everything (like they did me), I had MRIs, an MS spinal tap, all kinds of tests, I even caught all my urine for 8 hours walking around the campus, and in the end, I walked out with MG after 4 days of testing.

REPLY
@Erinmfs

My MG was definatively diagnosed with a tensilon test with Mayo's neuro opthamology. I was seronegative and EMG negative at the time, but my eye was drooping. The tensilon injection opened my eye right up and I was diagnosed MG. I had a 4 day workup when I was first diagnosed. Go in with a positive attitude and let them test you for everything (like they did me), I had MRIs, an MS spinal tap, all kinds of tests, I even caught all my urine for 8 hours walking around the campus, and in the end, I walked out with MG after 4 days of testing.

Jump to this post

How painful was all the testing?

REPLY
@skhollandmt

Yes they are with Mayo. Because I need the macroadenoma removed I see endocrinology, neurosurgery, neuromuscular (because of the MG diagnosis), have labs, EMG's, and MRI! Very thorough evaluation for sure!

Jump to this post

How do you afford all this?

REPLY
@bustrbrwn22

How painful was all the testing?

Jump to this post

The testing wasn't painful at all. The worst part was carrying a jug around to collect urine. I had to take it everywhere with me, and collect urine. So embarassing. The spinal tap for MS wasn't painful at all, the nurse did an excellent job. I had a nuclear PET scan, that wasn't painful, I just recall being tired.

REPLY
Please sign in or register to post a reply.
  Request Appointment