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Is MG hereditary?
I’m curious if MG is hereditary. I ask because I have had three bouts with ocular MG and my older brother has just contracted ocular MG.
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24 Replies
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I was told by my neurologist that it is not hereditary. I guess it’s just the card we have been dealt.
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My family has 3 generations of mg. My father was diagnosed at 83 after years of misinformation, myself realized we had the same thing after my eyes quit working and I became weak, my neice when she recognized that she couldn’t see very well. She and I are seronegative which makes it hard to diagnosvhok2&9u
e. Don’t know about my dad, he died shortly after being diagnosed. 7
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I was very frustrated when I started my MG journey and couldn’t figure out how this could happen to me. In talking with my sister who was in private practice I found somewhat of an answer. According to her, and I probably won’t state this correctly, we have a gene or a marker that has been passed down on my mother’s side. Basically something that allows for a roulette wheel of sickness. I know two of the items on it were lupus and psoriasis as well as MG. There were several more but I have no recollection.
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It would say YES !!! But the question is still out there in LIMBO … with some say yes .. others say no, according to what I have read and been told by doctors. No one knows shit about MG. It was never taught in med school apparently. It took me 8 months to be diagnosed. No doctor could diagnose me with MG despite having every symptom, when finally diagnosed. I was diagnosed by a third floor nurse … who recognized it right away, as she had encountered patients in her long career in hospitals who had it … and recognized ALL MY SYMPTOMS .. as ONE DISEASE MG.
Some places say not HEREDITARY. Some say neuro-immune diseases run in families … so if one person has a NEURO DISEASE .. then another family member has a greater percentage of having a different NEURO DISEASE.
In my case I say YES !!! My grandmother died at a very young age of DISSEMINATED LUPUS ERTHEMATOSUS … six months before her only kid, my father got married.
I have been finally diagnosed with ACUTE OCULAR and GENERALIZED MG … since 3-24-2020, after an 8 month search … and am close to being ME AGAIN .. and in REMISSION.
My mother died … and my father (whose mom died of LUPUS) … was showing several signs of old age, getting very weak limbs, and an unknown disease. So I moved into the family residence and became his caretaker till he died on 7-10-2016. Then I got undiagnosed MG starting on 7-25-2019. I have been googling MG like crazy and belong to 4 MG ZOOM support groups .. now that I have a name for my disease … and what it is. Looking back I realize NOW that DAD had UNDIAGNOSED MG TOO. At the end, he complained of chewing and swallowing problems … as if he also had a LEDGE IN HIS THROAT .. as if something was keeping his food from going down. The doctors at a different BANNER Hospital than mine later … guessing dad could be having unknown “ISSUES” .. so they cut open his abs for a PEG FEEDING TUBE and sent him home, and he died three weeks later, totally depressed at not being able to eat the NASTY VEGGIES …
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Jonathan. Thanks for your story and assessment. I think my mother may have had undiagnosed MG. I was also interested in finding out more about the zoom support groups you spoke of if you would’ve mind sharing info. Thanks Fred
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I’m sorry to hear about your brother. It was my understanding that it wasn’t hereditary, but they are learning so much more about MG than when I was diagnosed nearly 9 years ago (with generalized MG), that may have changed.
That said, I was in an infusion center with a guy who had bulbar MG and a year or so after he was diagnosed his twin brother came down with it.
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It would be interesting if there were a study of MG patients to try and determine if there are any common DNA markers amongst us. Has anyone heard of such a study?
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I was diagnosed 5 years ago at 60 my grandmother was diagnosed in 1994 at 84. So is it? Also my brother was diagnosed with Amlyoidosis 3 years ago at 67. So for 3 of us diagnosed with Autoimmune diseases there must be something in our genes.
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I find this subject to be very interesting. I recently read an MG publication that there was a chance that MG could possibly be hereditary. This was a big change in their thinking. Prior to this article over the years MG folks denied this possibility.
OK here is my story. My maternal grandmother was diagnosed with MG when she could not keep her eyes open. According to my mother my grandmother had to have her eye lids sewed open because she could not keep her eye lids up.
My mother in the early 80’s was diagnosed with MG when she could not hold her head up.
In 2005, I was diagnosed with MG when I started having lots of blurred vision especially when my MD asked me to look up. Not only did my vision blur my but eyes started blink rapidly for as long as I looked up. I found this to be very annoying. Within 2 years I started to have trouble swallowing and speaking. At this time, I was told I needed a Thymectomy if I wanted to have a chance of controlling my symptoms and getting off some of the medications like Prednisone.
A few years later my oldest sister was found to be antibody positive when she had some difficulty breathing. This was her only symptom of MG.
A few years ago, my nephew was diagnosed with MG. He was seropositive. He had extreme weakness, and double vision with trouble walking.
When tell my medical team my family history of MG some would say it was hereditary while others would say clusters of disease within a family does not mean it is hereditary.
After nephew was found to be antibody positive with related symptoms, I am leaning toward saying yes, it is hereditary.
My sister had an interesting story which makes me shake my head in disbelief. MY sister was serum positive without any symptoms a year or two before she had her episode of shortness of breath. Her neurologist told me he was not going to treat a blood test result without symptoms.
MG is a challenging disease to treat as there are no rules to follow and everyone is a snowflake.
Maybe the answer is genetic testing for all family members. -
<p style=”text-align: left;”>I’ve no idea, but my mother also had MG, and my brother has a different autoimmune disorder, Polymyalgia rheumatica. He lost all his hair, permanently, due to Alopecia when he was just 18 years old; that’s also an autoimmune problem. So I believe the autoimmune element is hereditary, but not necessarily the MG.</p>
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I suspect it might be. Certainly the autoimmune aspect could well be. I was diagnosed at 17(I am now 78 and well with regard to MG) but I think my paternal grandmother was an undiagnosed myasthenic as she was bedridden and weak for the last few years of her life and her eyelids were always at half mast. She died before Iwas diagnosed so we couldn’t compare notes. I have recently developed polymyalgia rheumatica and my mother had that, so the autoimmune streak is there. As a herbalist I had myasthenic patients and they often had other autoimmune illnesses in their families. Is there an environmental element? Toxic chemicals? The common diet eaten by family members to causing symptom triggering? There are many unanswered questions.
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It’s not supposed to be. But, my Dad was diagnosed years ago and I was just diagnosed in 2020. I don’t think it’s been studied enough to make the correlation. But, if autoimmune diseases are in the family it’s more likely that something like this happens. MG can be triggered by a virus.
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At age 70, my Dad was diagnosed with MG. I was diagnosed at age 60. I was told MG “wasn’t hereditary , but ran in families.” I think I know what that means. As of now there isn’t an identified hereditary. Despite no medical training I feel someday there will be a conclusive connection with hereditary.
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There is a study from Thailand that states it is hereditary. At one point, there were 23 members of my family with MG. My family all believes it is hereditary. How else would there be so many?
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I think the Muscular Dystrophy Association gives the best explanation of the conundrum that MG is not hereditary but has a genetic component:
What is the genetic susceptibility in MG?
Although MG and other autoimmune diseases are not hereditary, genetic susceptibility does appear to play a role. It seems likely that genetic factors also contribute to the pathogenesis of MG. Certain human leukocyte antigen (HLA) types, cell-surface proteins that are responsible for the regulation of the immune system, have been associated with myasthenia, including HLA-B8, DRw3, and DQw2. MuSK antibody-positive myasthenia is associated with haplotypes (clusters of genes inherited together) DR14 and DQ5.Most studies suggest that if people have a relative with an autoimmune disease, their risk of getting an autoimmune disease is increased — the closer the relative, the higher the risk.
Even for identical twins, however, that risk is relatively small. Most studies suggest that when one twin has an autoimmune disease, the other has less than a 50% chance of getting the same disease.
Also, people who already have one autoimmune disease have a greater risk of developing another one. It is estimated that 5% to 10% of people with MG have another autoimmune disease that appeared before or after the onset of MG. The most common of these are autoimmune thyroid disease, rheumatoid arthritis, and systemic lupus erythematosus (a disease that affects multiple organs).
References- Carlsson, B., Wallin, J., Pirskanen, R., Matell, G. & Smith, C. I. E. Different HLA DR-DQ associations in subgroups of idiopathic myasthenia gravis. Immunogenetics (1990). doi:10.1007/BF02115001
- Niks, E. H. et al. Strong association of MuSK antibody-positive myasthenia gravis and HLA-DR14-DQ5. Neurology (2006). doi:10.1212/01.wnl.0000218159.79769.5c
Borrowed from the website: https://www.mda.org/disease/myasthenia-gravis/causes-inheritance
Hope this is helpful.
I believe I am in the category that I have another autoimmune disease (celiac), and MG piled on in 2014 at 57.
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My neurologist gave me the opportunity to be involved in a genetics study. (It was not at her hospital.) The lab said that I had two different genes that are known to cause MG. The thing is, they are recessive. I only had one copy of each. So I should not have it.
My grandfather was diagnosed by an old country doctor with MS back in the 40’s. There were no good diagnostics. His signs were exactly the same as mine.
There is a genetic component according to the DNA guys. But I don’t think that they know as much about it as they think they do, because I should not have it. I have 2 different recessive genes. They feel certain that the genes are recessive. They are not on the same allele. So the two don’t match up.
Somebody said before, There is probably a genetic component.
If I can find that paper, I will tell everybody what the company is and what those genes are.
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Hello. I was part of a study group in Houston Texas about 12 years ago, at Methodist Hospital. It lasted about two years and they found that MG can be hereditary. I’m not sure about your MG. I have generalized MG. I’ve had it since 1993. It goes up and down. Right now I’m on the Ultomiris treatment and it is working pretty good. Good luck. I hope that I helped you with your question.
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My niece was diagnosed with mg 2008. I was diagnosed in 2014. She gets infusions every two weeks. I do no infusions. I as well as my niece were both told not hereditary. Both is us have autoimmune deficiency’s.
Jane
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genetic component that contributes to the condition. In most cases, MG is not inherited from parents or passed down through families.
MG is an autoimmune disorder that occurs when the immune system mistakenly attacks the acetylcholine receptor (AchR) at the neuromuscular junction, which results in weakened muscles and fatigue. There are some rare cases where a genetic mutation can cause congenital myasthenic syndromes (CMS), which shares some similarities with MG. However, CMS is caused by a genetic mutation rather than being hereditary.
In summary, while MG is not generally considered a hereditary disease, rare genetic mutations could cause conditions that share similar symptoms with MG, such as congenital myasthenic syndromes.
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This is a very good and interesting topic. It seems like it should be and I wonder if anyone has done a survey in how many families have it. Just look at the few here with stories.
mine comes with all un/mis diagnosed.
MY father was told he probably had ALS at 79. He suddenly became weak, could not use his fingers, then could jot swallow, could not talk. He was jot one to make the trip from AZ to UCLA to get a firm dx. Therefore he withered away, with no treatment of any kind and died at 81. He suffocated in his phlegm.
MY daughter has had bilateral drop foot since 27, now 53. Diagnosed with CIDP, and a host of many other autoimmune diseases. Most recently as she is now in a wheelchair, and losing function of both arms, one went first, second is 70% gone. She has some ptosis, and has been prescribed a Bi-Pap machine for sleeping. Has been on oxygen for high elevations. Currently her body is wasting away. She most recently has been down a rabbit hole after genetic testing where Neuro’s at Mayo, UCI all believe she has a muscular dystrophy disease, which of course they cannot concretely confirm.
I first had occular symptoms and weakness, fatigue in 2012. I was finally diagnosed with Seronegative MG in 2020. I am fortunate to have connected with a great neuro who specializes in MG , is Seronegative friendly and am now on Vyvgart, 7 mg prednisone and 240 mg mestinon. I’m doing better at this point than either of my relatives did or are. Through ancestry.com we have identified a great, great aunt that was in a wheelchair from 50 yrs old on.
How likely is it the 3/4 relatives have a different muscle disease?
I don’t believe it. My daughter is convinced of the dystrophy but it seems to me that an MG patient could end up in a wheelchair, losing use of limbs if untreated.
appreciative of any input with any of your experiences. -
Hi!
This is an interesting discussion and it sure does look like it is hereditary! My mother died of MG at 75 after being diagnosed at about 72. Her neuro didn’t know much about MG I can see in looking back at it. He just treated her prednisone even though Mestanon and other therapies were available at that time. She spent 12 weeks on a respirator and died a few months after she was taken off it. She did a “Do Not Resuscitate” so she wouldn’t have to do that again.I was diagnosed just over a year and a half ago when I was 72. I have a great neurologist and a doing fairly well at this time. I haven’t had any crisis. No one else in my family that I know of has had MG or any other auto immune diseases (well, other than my wife who has lupus, but since we aren’t brother sister or otherwise related, that doesn’t count!! ;->
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Good morning. I was part of a study group in Houston Texas, and in their results, they determined that it can be hereditary. But it can skip several generations. They also found that it can different or same types of MG. Back before the 1950’s, it was labeled “Chronic Fatigue Syndrome.”
They mostly gave medication to try to boost their energy level. But did not help treat the cause. They even done blood transfusion in some case’s.
The short answer is, “Yes”. I hope this helps you. Good luck. I have had MG since 1993. I have had all of the treatments. Right now I’m somewhat stable on the Soliris treatment again. All of my skeletal muscles are affected, as well as my eyes with double vision. It’s been a roller coaster ride. The only advise that I can give you, is to keep fighting and stay positive. Laugh a lot. Laughter is indeed the best medicine. I had a malignant Thymoma and had part of my left diaphragm and my Thymus gland removed. I had radiation therapy and lost the use of my left lung. But in spite of it all, I’m still kicking and complaining. Just not kicking as high or complaining as loud.
Stay positive and do a lot of research on the treatment that you are prescribed. If your doctor says that that is all that they can do, find another doctor. Good luck. -
I think it’s best to ignore all mentions of a possible cause of Myastheina Gravis. There is no known, proven cause. Yes it’s likely from a defective gene in one of the precursor cell types of the immune system (at least in creation of the ACh receptor antibody type of MG, the most common type). Something (or some things) probably cause a mutation in the DNA of the associated precursor cell causing it to produce the autoimmune antibodies. Except for the possibility that the mutated gene was inherited, only environmental factors could probably be the cause: maybe toxic chemical exposure such as drugs, medicine, pollution, maybe a virus. Kinda like many causes of cancer. Maybe something else, but who knows?! We don’t even know for sure, in many cases, what triggers cause our flare-ups.
I believe my MG was triggered by a shot of Shingrix (a live-virus vaccine for preventing shingles) but I base that on the fact that my first MG symptoms appeared right after the first booster shot (I then refused the second required booster, of course). More recently I learned that vaccinations containing live virus are contraindicated (per MGFA’s Cautionary Drug List) for MGers, so that sort of helped solidify my current belief.
Even the NIH “hints” about a possible hereditary factor, but based only on anecdotal evidence (https://pubmed.ncbi.nlm.nih.gov/7308244/). But so far there is no scientific proof that there is a genetic predisposition for developing MG. If there is, then it would definitely be an inherited genetic trait.
I base all my comments on my educational background and what I’ve been learning about the disease through extensive research since my MG symptoms started in 2020. I strongly recommend that you learn as much as you can about MG, because we all still must be our own advocates first, in order to maximize our daily lives and minimize our suffering. Good luck in your quest for knowledge!
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I just read this on the Mayo Clinic Website.
Shingrix is a nonliving vaccine made of a virus component. It’s given in two doses, with 2-6 months between doses. The most common side effects of a shingles vaccine are redness, pain, tenderness, swelling and itching at the injection site, and headaches.
I was also told that this isn’t a live vaccine by my neurologist.
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Auto immune diseases tend to run in families, but not necessarily the same disease. I was diagnosed at 37 with Myasthenia Gravis, however there are no other cases in my family. But there is a lot of rheumatoid arthritis and one case of polymyalgia rheumatica. I am now 67. There are families that do have 2 or 3 children that all have Myasthenia Gravis.
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What is the source (web site, etc.) you used for learning about the multiple children in a family having MG? I’d very much like to read it. Thank you!
Mike-
This article on our site discussed a study that found those who have a relative with MG to be more likely to develop it, especially siblings, compared to the general population, https://myastheniagravisnews.com/news/myasthenia-gravis-patients-immediate-relatives-more-prone-developing-disease-taiwan-study-suggests/
– Jodi, Team Member
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Mike,
One of the ladies on a Myasthenia Gravis group has a brother (might be 2, I can’t remember) with MG. I belong to several MG groups on Facebook and I don’t remember which group, but I did get a chance to meet her about 25 years ago … she lives in Maryland and I lived in Delaware at the time. Now I am in upstate New York. We have lost touch over the years as I don’t go to the groups much anymore. Forgot to say, she has MG too.
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Today’s medical community says that it is not. Yet there is much antidotal evidence to suggest it is – at least in some regards. Both my Mother and my brother have autoimmune deseases.
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I know that they say that MG doesn’t run in families. However, at one time my family had as many as 23 members with MG. A good number of them only had the one disease. Quite a few of these have passed on now. I wish we could have had a study done on the family.
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