Myasthenia Gravis is easily confirmed . If the ACHr is above 25, MG is positive. However, one can be sero-negative which means it is NOT ACHr positive. Two older diagostic methodologies are the Tensilon and single fiber tests. I was diagnosed positive with the Tensilon test and verified with the ACHr blood test which I had a 49! Oh yes, I certainly Do have MG! I have so much MG information researched from reputable sites, that I present to my MG support group that I started when my MG was stabilized. There several MG websites that have a lot of information. If you are diagnosed with MG (or any other auto-immune disease), EDUCATION on that disease is paramount!! Many things, even many medications can worsen MG, even causing MG crisis so EDUCATE it could save your life!
I was diagnosed in late 2015 with achr positive refractive myasthenia. I know that lab results are not definitive and the teaching hospital I was in did a test ( don’t remember what it was called) where they used electrical shocks ( for lack of a better word) that finally confirmed diagnosis.I had a rough go of it for about six months but am stable now living my new normal. I get plasmapheresis every eight weeks and IVIG every four weeks. I have been crisis free since mid 2016.
Myasthenia Gravis is easily confirmed . If the ACHr is above 25, MG is positive. However, one can be sero-negative which means it is NOT ACHr positive. Two older diagostic methodologies are the Tensilon and single fiber tests. I was diagnosed positive with the Tensilon test and verified with the ACHr blood test which I had a 49! Oh yes, I certainly Do have MG! I have so much MG information researched from reputable sites, that I present to my MG support group that I started when my MG was stabilized. There several MG websites that have a lot of information. If you are diagnosed with MG (or any other auto-immune disease), EDUCATION on that disease is paramount!! Many things, even many medications can worsen MG, even causing MG crisis so EDUCATE it could save your life!
@nanajojo Welcome to Mayo Clinic Connect! Just by posting here, you have joined the group! We’re people from everywhere sharing tips and asking questions. Read through the past posts to get an idea of how everyone is coping and what suggestions they have.
Have you been prescribed medicine or treatment for MG?
I was diagnosed in late 2015 with achr positive refractive myasthenia. I know that lab results are not definitive and the teaching hospital I was in did a test ( don’t remember what it was called) where they used electrical shocks ( for lack of a better word) that finally confirmed diagnosis.I had a rough go of it for about six months but am stable now living my new normal. I get plasmapheresis every eight weeks and IVIG every four weeks. I have been crisis free since mid 2016.
Can you explain plasmaphoresis to me, as my Neuro doc has suggested I do it for my CIDP.
Honestly I’m not keen on having the line placed in my chest, afraid of an infection.
Becky, Volunteer Mentor | @becsbuddy | Oct 16, 2023
@harley22 Good morning! I put a link to May Clinic’s site on MG. https://www.mayoclinic.org/diseases-conditions/myasthenia-gravis/symptoms-causes/syc-20352036
It doesn’t explain the mechanisms of plasmapheresis, but. I actually had the process several years ago when I was donating plasma. Simple but boring. An IV is placed in your arm and you are hooked up to a machine (looks similar to dialysis. The plasma is separated from your blood and thrown away. Then the blood is returned to you.
Why did the doctor suggest a central line (line in your chest)?
The MG support group I started in August 2018 is named MG RGV Support Group.
The support group information is on the MGFA website (myastheina.org) under support groups. Email or call me using that information. This support group is located in the Rio Grande Valley, deep south Texas! We meet once a month. Best group of people ever!! Every bit of MG educational material I find from CREDIBLE sites is emailed to the whole group when I receive it. EDUCATION is your defense for ANY autoimmune disease. KNOW YOUR DISEASE!! I have SO MUCH information from credible sites that I email to anyone who wants to learn MG.
Can you explain plasmaphoresis to me, as my Neuro doc has suggested I do it for my CIDP.
Honestly I’m not keen on having the line placed in my chest, afraid of an infection.
I have two ports and they access them and hook me up to a machine that one line removes blood and it goes through machine and blood and plasma are separated. The blood is returned through same line and plasma is collected and discarded since that’s where the bad antibodies are. It is replaced with albumin. It’s really not bad and literally saved me when in crisis.
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@winddie Welcome to Mayo Clinic Connect! This following discussion may help you with your question:
https://connect.mayoclinic.org/discussion/myasthenia-gravis-can-it-come-back/
@kay56 really knows quite a bit about MG so she’ll be a great resource.
May I ask how you found Mayo Connect?
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1 ReactionMyasthenia Gravis is easily confirmed . If the ACHr is above 25, MG is positive. However, one can be sero-negative which means it is NOT ACHr positive. Two older diagostic methodologies are the Tensilon and single fiber tests. I was diagnosed positive with the Tensilon test and verified with the ACHr blood test which I had a 49! Oh yes, I certainly Do have MG! I have so much MG information researched from reputable sites, that I present to my MG support group that I started when my MG was stabilized. There several MG websites that have a lot of information. If you are diagnosed with MG (or any other auto-immune disease), EDUCATION on that disease is paramount!! Many things, even many medications can worsen MG, even causing MG crisis so EDUCATE it could save your life!
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7 ReactionsHi @winddie, have you received a confirmed diagnosis of Myasthenia Gravis? How are you doing?
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2 ReactionsI was diagnosed in late 2015 with achr positive refractive myasthenia. I know that lab results are not definitive and the teaching hospital I was in did a test ( don’t remember what it was called) where they used electrical shocks ( for lack of a better word) that finally confirmed diagnosis.I had a rough go of it for about six months but am stable now living my new normal. I get plasmapheresis every eight weeks and IVIG every four weeks. I have been crisis free since mid 2016.
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2 ReactionsI was recently diagnosed with MG. I would love to join your MG Support Group. How do I join?
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1 Reaction@nanajojo Welcome to Mayo Clinic Connect! Just by posting here, you have joined the group! We’re people from everywhere sharing tips and asking questions. Read through the past posts to get an idea of how everyone is coping and what suggestions they have.
Have you been prescribed medicine or treatment for MG?
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Like -
Helpful -
Hug
1 ReactionCan you explain plasmaphoresis to me, as my Neuro doc has suggested I do it for my CIDP.
Honestly I’m not keen on having the line placed in my chest, afraid of an infection.
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Like -
Helpful -
Hug
2 Reactions@harley22 Good morning! I put a link to May Clinic’s site on MG.
https://www.mayoclinic.org/diseases-conditions/myasthenia-gravis/symptoms-causes/syc-20352036
It doesn’t explain the mechanisms of plasmapheresis, but. I actually had the process several years ago when I was donating plasma. Simple but boring. An IV is placed in your arm and you are hooked up to a machine (looks similar to dialysis. The plasma is separated from your blood and thrown away. Then the blood is returned to you.
Why did the doctor suggest a central line (line in your chest)?
-
Like -
Helpful -
Hug
1 ReactionThe MG support group I started in August 2018 is named MG RGV Support Group.
The support group information is on the MGFA website (myastheina.org) under support groups. Email or call me using that information. This support group is located in the Rio Grande Valley, deep south Texas! We meet once a month. Best group of people ever!! Every bit of MG educational material I find from CREDIBLE sites is emailed to the whole group when I receive it. EDUCATION is your defense for ANY autoimmune disease. KNOW YOUR DISEASE!! I have SO MUCH information from credible sites that I email to anyone who wants to learn MG.
-
Like -
Helpful -
Hug
2 ReactionsI have two ports and they access them and hook me up to a machine that one line removes blood and it goes through machine and blood and plasma are separated. The blood is returned through same line and plasma is collected and discarded since that’s where the bad antibodies are. It is replaced with albumin. It’s really not bad and literally saved me when in crisis.
-
Like -
Helpful -
Hug
3 Reactions