Myasthenia Gravis flares donating blood

Posted by MGMolly @Erinmfs, Dec 9, 2020

Has anyone else experienced this? I have MG, but I thought I'd donate blood for our local blood drive. I answered all of the questions with the blood center prior to the donation, there was no question about autoimmune disease to disqualify me. Soon after my donation, my MG flared! I was frustrated. Should I not donate blood with MG? Anyone else experience this?

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

Hello @kaylee1954 and welcome to Mayo Clinic Connect. I understand you have Lupus.

Have you been recently diagnosed? What kind of support or information would be helpful to you so I can best help?

REPLY

I was wondering about the vaccine for COVID can people with lupus get the vaccine.

REPLY

@kaylee1954 thank you for the additional information. I believe you might find this discussion in the COVID-19 group of interest regarding your vaccine question.

- Vaccines
https://connect.mayoclinic.org/discussion/vaccines-1/?pg=2

Join other members in this discussion to talk more about the vaccine.

REPLY

I was diagnosed with MG two years ago I have moved to Georgia and I now have a new Nuro doctor and he took blood run test and he says I do not have MG can you have MG without showing up in bloodwork?? If you have symptoms such as weakness,tired, trouble at times lifting my head off a pillow? Shortness of breath really bad , stairs are the worst!

REPLY

@fran1952 How confusing for you, to have two doctors with opposing diagnoses. The blood test shows the presence or absence of a protein, but it is not the only test for MG. What other tests have you had done? Weakness, tiredness, and shortness of breath can be symptoms of several autoimmune diseases. This has definitely left you in a very confusing and uncomfortable situation. Do you have a good friend or spouse who can go to meetings with you?
Are you able to get ahold of your previous medical records that state what the former doctor did and said? Would it be possible to ask for a follow up meeting with the new doctor to discuss how he/she came up with the new diagnosis? Please let me know what you are told.

REPLY
@fran1952

I was diagnosed with MG two years ago I have moved to Georgia and I now have a new Nuro doctor and he took blood run test and he says I do not have MG can you have MG without showing up in bloodwork?? If you have symptoms such as weakness,tired, trouble at times lifting my head off a pillow? Shortness of breath really bad , stairs are the worst!

Jump to this post

I think you can have sero negative MG. This means it is not shown in the blood but you have all the clinical signs and symptoms.
Ask about that.

REPLY

Hello,
This is news to me, everywhere I've tried to donate blood, I was denied except in the emergency case of my mom needing units of blood while in ICU. Even then, I was a perfect match, but my siblings and I had to sign wavers to break hospital protocols.
I live illinois and blood donation has to be antibody free (even though I am one of the 15% of MG cases without the identified antibodies known. They checked my medical records and that was all she wrote.

REPLY
@fran1952

I was diagnosed with MG two years ago I have moved to Georgia and I now have a new Nuro doctor and he took blood run test and he says I do not have MG can you have MG without showing up in bloodwork?? If you have symptoms such as weakness,tired, trouble at times lifting my head off a pillow? Shortness of breath really bad , stairs are the worst!

Jump to this post

Yes, I am one of the few MG patients, who do not have one of the 2 MG antibodies that show up in Mayo Clinic's Blood Tests. This also caused me to denied treatment with new gMG meds. However, I understand that reasearch is currently underway to identify the unknown antibody in 10%-15% of people with MG.

REPLY
Please sign in or register to post a reply.