New member, I suspect MG - please confirm which bloodtest I need?
Dear all
I am a new member here. I have had MG symptoms for well over 14 years now but its never been formally diagnosed.
It started all at the same time where the facial palsy happened on the left of my face with a droopy eyelid and droopy left mouth together with "tearing" on the same side. The doctor diagnosed this as facial palsy and sent me to a neurologist for further tests.
Then my voice became very hoarse and I have a constant lump in the throat which never goes away - I always find it hard speaking either publicly or for long periods. My tongue also seems to be thust against the rear of my front teeth leaving dents/dimples in the tongue - it is constantly tense and I feel it larger than it usually is.
The palsy was diagnosed as the cranial nerve and I was put on a set of powerful steroids for 1 week which definitely improved the palsy symptoms and the tearing but did not cure it.
Then I was sent to ENT to look at my vocal cords and everything seemed in order so I am now having vocal therapy which doesn't change anything, the underlying symptoms are constantly there with the lump in the throat and hoarseness and my tongue thrust.
I have been clutching at straws trying to understand what condition I have and even asked for a set of thyroid tests goven its proximity to the vocal cords but the thyroid is functioning normal. I also feel mostly depressed but before this I was a very positive person.
Having come across MG over the weekend, I am keen to ask my GP for a new set of blood tests on Monday. Could someone kindly let me know what I need to request and what ranges the blood values need to come back at please? I am literally tearing my hair out especially with my voice as I cannot function at work and people are yawning when I talk which is very disheartening when I am trying to be impactful. Thank you!
Hello, I have had the bloods taken which are described as ACH receptor antibody level but these have come back as normal, no action. Are there any other tests I could request since I understand that MG might not always show up in this type of test.
Thank you. I am a little confused by my blood test results. Can you help my decipher this:
negative acetylcholine receptor titre: 20 strong positive
The doctor has interpreted this as Normal, no action. Is that correct?I’m sorry I cannot help to further interpret your results, as I am not a medical professional. I would encourage you to reach out to your doctor, possibly through your patient portal if that’s available. Your doctor or someone in their office should be able to further explain your result. As patients we have to be our own advocates, and you deserve to fully understand your results and what they indicate for your personal diagnosis and treatment. I hope you get some clarity on this issue! -Julie (team member)
Thank you for your reply David75. I have a blood test booked in on the 14th so will report back then.
In the meantime, is there anything I can do to relieve the pressure on my voice and speak without the voice breaking up or sounded weak as I have an interview this week and need to be on top form. Many thanksIn the early stages, years ago, a pyridostigmine really helped my voice. Now it's just petty much always weak. Sorry. Maybe someone else can help???????
Hi Codey. If you have MG, your blood will contain an antibody that shouldn't be there. It will usually be anti-acetylcholine antibody, but it could be anti-MUSK antibody. It's the same test for either. Just ask for the myasthenia gravis blood test.
The value doesn't matter. Any level of antibody indicates MG. It's not unusual to have to encourage a doctor to test for it. Most have no experience with MG. The test is a simple blood draw and the results are back within a few days. Good luck.yep yep Acetylcholine Receptor (AChR) antibodies Test is the the one you need to be sure, but ofen pyridostigmine will give you a high probability if you do or do not have MG, if symptoms like double vision go away on pyridostigmine, in a couple hours you will have a pretty good idea if you have MG or not. For me the symptoms went away and 10 days later i broke out in a rash, so although it helped, i needed other meds. For someone who wasn't allergic to nearly all medications, when it came to MG meds, my oh my, did i find a lot of new medications i couldn't take. Prednisone and Vyvgart are what i'm on now, which keep me fairly stable.
