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    • #18015
      Jodi Enders
      Keymaster

      Some of you had mentioned you would like to know more about decreased energy with MG.

      The article “Fatigue, Sleep, and Autoimmune and Related Disorders,” by Mark R. Zielinski, David M. Systrom, and Noel R. Rose explains the lack of energy or fatigue in terms of autoimmune disease broadly. When we limit our knowledge to research specifically on Myasthenia Gravis, we may be limiting our possible understanding. There is such a limited quantity of MG scientific research that’s out there. 

      Profound and debilitating fatigue is the most common complaint reported among individuals with autoimmune diseases. Processes known to play a role in fatigue include oxygen/nutrient supply, metabolism, mood, motivation, and sleepiness. All of these we can trace back to inflammation! 

      A second article by Fredric Cantor, “Central and peripheral fatigue: exemplified by multiple sclerosis and myasthenia gravis,” discusses the central and peripheral nervous systems’ contribution to fatigue. Fatigue can be part of the primary symptom of the disease. Still, other factors could be involved in fatigue and decreased energy, including depression, sleep disturbance, medication, or deconditioning.

      Myasthenia Gravis (MG) patients exhibit peripheral fatigue. “Antibodies to the postsynaptic acetylcholine receptor at the myoneural junction” cause a halt in muscle functioning. Thus, we feel fatigued. MG treatments = increase acetylcholine = reduce antibody formation.

    • #18035
      Anonymous
      Inactive

      I’m an gMG patient foe the last 15-16 years. The physicality exhaustive feeling that I was sure were mental are very much Physical Occurrences.
      I live in Brooklyn New York and my place of business was in Lake Ronkonkoma, at best an hour plus drive. I enjoyed my drives to and from work.
      My first instance that something was wrong happened while I was driving to work.
      I pulled off the highway and sat for an hour, I called my office and told them I was having trouble but I was okay.
      It’s many years later, I was finally diagonsed correctly.

      A port was placed in my chest and for the past 31/2 year I undergo plasmapheresis once a month.
      Does it work? For me, yes. A feeling of strength lasts about 21/2-3 weeks. A daily pharmaceutical regimen helps
      Yes Myasthenia Gravis weakened my arm nuscles, I can no longer drive or work .
      But my wife and I are married 50 plus years and are closer then ever.
      Truth be told I hate being weak. I push depression away daily. Life is good but I’ve got to not feel sorry for myself.
      If I can help just call out

    • #18036
      Anonymous
      Inactive

      I’m an gMG patient foe the last 15-16 years. The physicality exhaustive feeling that I was sure were mental are very much Physical Occurrences.
      I live in Brooklyn New York and my place of business was in Lake Ronkonkoma, at best an hour plus drive. I enjoyed my drives to and from work.
      My first instance that something was wrong happened while I was driving to work.
      I pulled off the highway and sat for an hour, I called my office and told them I was having trouble but I was okay.
      It’s many years later, I was finally diagonsed correctly.

      A port was placed in my chest and for the past 31/2 year I undergo plasmapheresis once a month.
      Does it work? For me, yes. A feeling of strength lasts about 21/2-3 weeks. A daily pharmaceutical regimen helps
      Yes Myasthenia Gravis weakened my arm nuscles, I can no longer drive or work .
      But my wife and I are married 50 plus years and are closer then ever.
      Truth be told I hate being weak. I push depression away daily. Life is good but I’ve got to not feel sorry for myself.
      If I can help just call out

      • #18037
        Nan
        Participant

        Stanley, this is off topic, but what is it like having a port? For the past 2 1/2 years I have been having plasmapheresis treatments, and it looks as if my antecubital veins aren’t going to hold up much longer. Plex helps me more than anything, but I am leery about having a port installed. I had hoped that by now we would have found an immunosuppressant that works for me so that I don’t have to continue Plex treatments, but unfortunately since I am seronegative, we are running out of immunosuppressants to try.

        -Nan

    • #18043
      Anonymous
      Inactive

      Good morning Nan. To start with you’re not unusual or different. Immunosuppressives don’t work for all and those of us they work for have problems with them.
      I have a Shiliey port in the upper left side of my chest
      It’s above my left pec.
      I’ve had trouble with an infection that had my port changed. There’s no pain and instead of 3 treatments a month I have 1.
      Being seronegaive doesn’t mean there’s nothing else to do, have your medical team keep on searching. They will find something. Possible changing the ports from a pickstick to an inchest port will work.
      By the by nothing is off topi. GOD BLESS

    • #18045
      Nan
      Participant

      Dear Stanley, Thank you. This has been an especially challenging week. Your kind reply means the world to me.

    • #18046
      Anonymous
      Inactive

      Be well, if ever you’re in need, I’m  here

    • #18061
      Norm
      Participant

      Does MG affect other than just voluntary muscles, such as the heart, esophagus, or stomach?

      Does MG sometimes affect the rectum, anus and anal sphincters? (They seem to be part voluntary and part automatic muscles.)

      • #18066
        Jane DeLisle
        Participant

        MG is defined as a disease of the neuromuscular junction of striated muscle cells.  Smooth muscle cells are excluded from this definition and I believe many of the digestive muscles are smooth.

        One thing has been bothering me.  Many smooth muscles utilize muscarinic acetylcholine receptors, versus the nicotinic acetylcholine receptors used in striated cells.  If immune cells can create autoantibodies to nAChR, they sure could create autoantibodies to the muscarinic receptors mAChR.  But only one lab in the world that I know of, CellTrend in Germany, specifically tests for mAchR antibodies in their POTS-CFS/ME-SFN-Long Covid test.  This also raises the question whether the acetylcholine receptor antibody tests in many labs such as Mayo, LabCorp, Quest, CPL and others only detect nicotinic receptor antibodies.

        Acetylcholine is a key neurotransmitter used by muscarinic receptors in the Autonomic Nervous System, which includes the digestive system, endocrine and many other parts of the body.  But the ANS seems to be the orphan child among many neurologists as it’s a system, not a body part like the central nervous system, nerves and NMJ’s, partially controlled by neurotransmitters but also by hormones (which is an endocrinology thing).

        I personally believe we are actually dealing with a spectrum disease of acetylcholine transmission, where MG is just a manifestation of this disease, and that an injustice is being served on patients who struggle with MG and other symptoms by restricting diagnosis and treatment to just the book definition of MG.

        • #18067
          Norm
          Participant

          I have also thought MG is a spectrum disease. The symptoms of MG vary widely among people, and may vary widely for one person over time.

          There seems to be a lot evidence that people diagnosed with MG may have involuntary (autonomic) muscle involvement as well. For example ” Cardiac involvement in myasthenia gravis may take several forms, ranging from asymptomatic ECG changes to ventricular tachycardia, myocarditis, conduction disorders, heart failure and sudden death.” And ” In conclusion, our study results showed that MG patients had significantly more LUTSs (overactive bladder) than healthy control subjects and had worse LUTS-related QOL; therefore, amelioration of LUTS in MG is important. ”

          So should the term “myasthenia gravis” be reserved for those with only striated muscle involvement? (You have MG, and some other disease.) Or does it make more sense to create a new constellation of diseases called myasthenia gravis? I think the latter, because as you said, patients are injured “… by restricting diagnosis and treatment to just the book definition of MG.”

           

    • #18064
      Anonymous
      Inactive

      After many years with gMG My swallowing has been affected, I can start coughing and not swallowing, mostly uncontrollably.
      I’ve spoken to my doctors and I’ve been told chew better, swallow and take smaller bites. Nothing works. It’s an uncomfortable and inconvenient way of
      digesting food.
      I’ve had problems with my anus, Sphincter and stomach. My neurologist blames the gMG
      Stay calm, eat in smaller bites. You will be well, just learn to handle what’s happening to you.

      • #18068
        Norm
        Participant

        I’ve also had uncontrollable coughing and some of the other symptoms you mentioned. (I’m transitioning to a mostly liquid diet.)

        I’m glad that your neurologist was willing to group digestive problems under the MG label. It’s outside the usual definition.

        I think MG has many guises. I think it may present as one kind of weakness for years before “coming out” as ptosis and diplopia and other recognizable forms.

    • #18065
      Jane DeLisle
      Participant

      Energy

      Life cannot exist without energy.

      I am in the middle of a painfully slow relocation effort and the medical textbook I want to reference is in a box somewhere on the other side of the country. The book is about something like molecular microbiology. I haven’t had a chance to get past chapter 1 yet, but it was an eye opener. It was about how every single life process uses energy. (And I apologize for not being able to fully read and digest these two incredibly detailed articles at this time.)

      It takes energy for a plasma cell to manufacture the autoantibodies that attack our own body in autoimmune disease. I read somewhere that dormant immune cells use very little glucose, but when they are active, they guzzle glucose and use it to make antibodies. Interestingly, I’ve read several publications that document how the drug Metformin interferes with the ability of plasma cells to utilize glucose, essentially “putting them on a diet” and slowing down their ability to make antibodies. Additional publications have floated the idea of piggybacking Metformin with immunosuppressants like DMARDs and biologics to make them more effective. Essentially, Metformin is not a “diabetic” drug, but rather another type of immunosuppressant.

      Something else I read somewhere is that glucose is not passively absorbed through cell membranes, but can only get inside cells through doorways called GLUT transporters. 9 of them known to date, only GLUT4 is insulin sensitive. 2 takeaways here – Since the other 8 are not insulin sensitive, that hormone has no influence on how glucose is absorbed by many cells (and thus tosses the grandiose handwaving terms “insulin resistance” and “glucose sensitivity” into the junk science bin). Takeaway #2 is that, if a known hormone can modulate the behavior of one GLUT transporter, what else can modulate each one of the others?

      During World War II, American citizens were subject to food rationing. After all, we had a war to win, and so food distribution was prioritized for the benefit of the soldiers. I can easily apply this analogy to an immune response (whether it is good or bad). Active immune cells need glucose to do their thing, and it sure would be nice to somehow signal other parts of the body to scale back their normal glucose usage to allow immune cells first dibs on this energy source. I wouldn’t be a bit surprised if GLUT transporters are also sensitive to proinflammatory mediators such as cytokines, closing the door and restricting cells from absorbing glucose in deference to the needs of immune cells.

      There is one other organ in the body that also uses prodigious amounts of glucose – the brain. I also wouldn’t be surprised if the immune system has priority over the brain, through the modulating use of cytokines and other proinflammatory chemicals. I don’t know if anybody has at their fingertips any studies that looked at brain glucose metabolism versus fatigue levels. But going with this train of thought, the more active an immune system, the more glucose deprived the brain becomes, resulting in increasing levels of fatigue. This puts fatigue levels at a one-to-one indication of the activity of the immune system, and a red flag that immunosuppressant treatment is not adequate.

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