Posted on 04/13/2025 12:53:03 PM PDT by scouter
Do any Freepers have any experience with Myasthenia Gravis (MG)? Either yourself or a close family member? I’m particularly interested in what led to diagnosis, symptoms you noticed before diagnosis, and what the first year or two were like.
I’m not gonna respond to every response, but I’ll certainly be reading them and appreciate any insight you offer.
Dad had it. He also suffered from exposure to Agent Orange, if that helps.
My grandmother had a pretty hard case. Plasmapherisis once a month kept her in good shape. She lived into her 90’s. She was diagnosed around the age of 75.
Mostly severe and sudden muscle weakness and lack of coordination.
Just an anecdotal report I heard once that it can be a side effect of statins.
My mother has it.
Association between myasthenia gravis (MG) and excess iron.
Based on the search results, the association between myasthenia gravis (MG) and iron appears complex, but current research predominantly points towards iron deficiency or altered iron metabolism rather than excess iron being common in MG patients.
Here’s a breakdown of the findings:
Iron Deficiency is More Commonly Reported:
Multiple studies found that non-anemic, immunotherapy-naive MG patients had significantly lower serum iron (SI) and transferrin saturation (TS) levels compared to healthy individuals.
Iron deficiency was found to be prevalent in MG patients (one study reported a 73.68% deficiency rate).
Lower serum iron levels were negatively correlated with levels of acetylcholine receptor antibodies (AChR-Ab) and Interleukin-6 (IL-6), suggesting that lower iron might be associated with higher disease activity or inflammation.
Iron inadequacy seems particularly common in premenopausal female patients with MG.
Anemia in MG:
Anemia, often iron-deficiency anemia, is frequently observed in female MG patients (one study found 40% had a history of anemia post-diagnosis).
This anemia was associated with greater MG severity, more frequent use of immunosuppressive treatments (which might contribute to iron metabolism issues), and poorer quality of life.
Altered Iron Metabolism:
While outright excess iron isn’t typically reported, some studies note alterations in iron metabolism markers. For instance, higher ferritin levels (an iron storage protein that can also be elevated during inflammation) were associated with more severe generalized disease in one study. This suggests inflammation-related dysregulation rather than simple overload.
Research is exploring the role of iron-dependent cell death (ferroptosis) and mitochondrial function in the pathogenesis of MG, indicating iron’s involvement at a cellular level, but this doesn’t equate to systemic iron overload.
Context for Iron Overload/Sensitivity:
There is a case report of a patient with MG and red cell aplasia who developed hepatic iron overload, but this was potentially secondary to the aplasia or hereditary hemochromatosis, not necessarily MG itself.
A letter to the editor discussed potential exacerbation of MG symptoms following intravenous iron administration, suggesting a sensitivity in some individuals rather than an underlying state of excess iron.
In conclusion: While iron metabolism is clearly relevant in MG, current evidence does not support the idea that MG is generally associated with excess iron. Instead, research highlights a tendency towards iron deficiency and altered iron regulation, which may be linked to disease activity, inflammation, and potentially treatment side effects.
I have about 20 US patents related to the normalization of iron metabolim.
Any idea how it was discovered and what symptoms they had before diagnosis?
Odd that you note a military connection. As an ROTC cadet doing my advanced camp at Ft. Bragg in the summer of 1990, a fellow cadet woke up one morning having lost control of the muscles on one side of his face, and was later diagnosed with MG. About 6-7 years later, I was in Korea, and an aviator I lived with in my BOQ was also diagnosed with MG after starting to experience blurry vision. In both cases the onset of noticeable symptoms was quite rapid.
If it's any consolation, I have an aunt who was also diagnosed with MG in the low severity range. She's 96 and about as active (and ornery) as you could expect anybody to be at that age.
I know it was a long road to diagnosis. I think it was mostly weakness of muscle groups and some vertigo-ish kinda things.
My comments are based on early 1980’s. I’m sure a lot has changed since then as far as clinical diagnosis and therapies. I can say that after a few years of troubles, she never had a comment or event about it again. So I’m not saying they cured her, but they certainly got it under control.
My mother has it. Her mother had it.
My mother was diagnosed when she was 70. She is now 80 and doing great. Her first symptom was one eyelid was drooping. She takes an infusion for it and it works pretty well.
My mother had it in 2007. One doctor at a big Rochester (NY) hospital told her she was just getting old and sent her home (to die).
For weeks she degraded. My sister diagnosed it via Internet research when no doctor could l was able to.
The day food and water came out of her nose when she tried to swallow, my sister called the department head at the hospital who told her to get her there ASAP, so my brother took her.
Sister flew in to Rochester from FL. I flew in from CA. She was so emaciated I didn’t recognize her.
She was weak. Couldn’t lift her arms or really move. Lost a ton of weight because she couldn’t swallow food. She was like a rag doll. Had double vision. Thought it might be her eyes; it wasn’t. We even considered botulism. I don’t recall ALL the symptoms.
After 24 hours of IVIG she recovered. I think the doc told my sister that she had maybe hours to live. She was on a drug, cellcept, until she died last April 15 at 99 y.o., but recovered beautifully.
Who? Was he related to Latka Gravis?
Losing ability to taste would be horrible for anyone, but for a 300 pounder it has to be particularly awful however it didn't affect his weight.
Muscle weakness and vertigo.
Yale School of Medicine list these two symptoms as part of the Post Vaccine Syndrome.
Muscle weakness and vertigo.
Yale School of Medicine list these two symptoms as part of the Post Vaccine Syndrome.
Ooops!
what blackdog and others said.
Severe headaches and respiratory problems too. Slept sitting up in his final weeks.
He and his men walked through jungles dripping with that stuff, though not at all sure there’s a nexus with MG.
Iron is toxic in humans. Hemoglobin carries iron in the blood. Hemoglobin binds iron so that it is no longer toxic. The spleen places iron into hemoglobin.
When the blood has too much free iron it causes the liver to produce hepcidin. Hepcidin breaks down ferroportin, the iron membrane transporter. Ferroportin works to transport iron from hemoglobin into cells. Ferroportin also transports ingested iron across the intestinal lining into the blood.
So hepcidin attenuates iron entering the blood, but it also attenuates cellular iron uptake.
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