[Carol Lawson]

I’ve had generalized MG since 2007. During my “loading dose” over several days, I had fierce headaches and body pains, like an unimaginably bad flu —Tylenol took off the edge just a bit. Subsequently, the doses have been lower over 1 or 2 days, and I still do get headaches and feel out of it for a day or two, but the difference in my ability to move, breathe and function with stamina make it worth it. During Covid, there was a pause in my treatment, and because of the gap, I had to do another “loading dose” with the same intensity and terrible flu-like symptoms, and headache, but again settled into just Tylenol for the headaches. I hope you are able to tolerate the treatment and have good results — this treatment has been a life-changer for me, and am immensely grateful. Summer heat is rough, but not as rough as it was before IVIG, when I would lose my ability to walk entirely. The dose lasts 4-5 weeks for me — all patients are different — the “Snowflake Disease” — as I imagine is response to treatment. Hoping you find the right medication and combination to treat your symptoms, hang in there — you can do it.

[Carol Lawson]

I tried XR180, and although it gave me better morning strength, could not tolerate the headaches (which I am told is probably a sensitivity to the material used to extend the release).  I tried several times, because the physical improvement in the morning was so appreciated, but the headaches were unbearable.  Wishing you good results and toleration of the medication.

 

[Carol Lawson]

Those of us with MG are told that we often have, or eventually develop, another immune related disease, e.g., RA, among others.  See another Myasthenia Gravis literate (and experienced) neurologist.  The MGFA has a list of such physicians across the country.  You want a treating neurologist who is highly familiar with the disease (often called the “snowflake disease” because of the great variability in presentation from patients.  Wishing you the best answers to your concerns, questions, and medical needs.

 

[Carol Lawson]

Working backwards from some of the difficulties you have been struggling with, a sleep study is critical for your care.  During REM phase of sleep, the auxiliary muscles involved in breathing become paralyzed, and the diaphragm does the work (we call it belly breathing as you can see in infants, with underdeveloped auxiliary chest muscle) — however, in MG, many of us have a stiff, less mobile diaphragm and so we can suffer oxygen deprivation during those phases of sleep (this was finally explained to me by a brilliant sleep specialist/pulmonary doctor). I use a bi-pap at night (it was a struggle to get the machine, since medicare only seems to understand COPD and frames its requirements for lung damage, not inadequate muscle engagement).  Rapid heart beat “tachycardia” is often a symptom of this disease, and my cardiologist and I are thrilled that regular use of the machine has lessened these events, since, because he is MG literate, he does not want to prescribe medications that cause other MG problems.  The machine has been useful for those spells during the day, when my breathing is shallow, as well, particularly during heatwaves in the summer.  Having shallow breathing, swallow difficulty and extreme weakness are all serious indicators of exacerbation of the disease, and it is difficult to convince doctors of this unless they, as they are trained for other diseases to do, observe it.  You need an experienced neurologist, and a neurologist who is experienced diagnosing and treating MG that is what they call, to my dismay, “sero-negative” — which isn’t the entire picture, since they fail to do every test for specific antibodies that may occur at different points in the cascade of firing a nerve at a muscular juncture.   I went through several doctors, including one who claimed I didn’t have the disease, after an SFMG negative result, and he somehow never got around to arranging the test that he said he would do to confirm whatever phantasy he had at the tine (this is called patient abandonment) — on the staff of a major NYC hospital.  Other “sero-negative” patients had the same horrid experience.  You need to get to a support group, MGFA has lists of national support groups, and meet other patients, such as yourself, who have been able to find neurologists who have CLINICAL SKILLS, not just test skills.  MGFA also has lists of doctors, but finding other patients in your area to get the inside information on them is most helpful.  Don’t waste your life on poor communication, and don’t feel badly about changing doctors — I usually simply say to the new doctor that I am grateful for the care I have gotten, but it wasn’t a good fit.  It may take 4 months to see a neurologist, but they should be available to you given your volatile situation when necessary.  I have had this disease in full force since 2007, and only got appropriate treatment late 2019-20.  Keep going until you have what you need, the relationship you need to support your health and reach out to support groups.  It is critical that you become more knowledgeable than any doctor about your disease — it is, sadly, our job to educate them, even neurologists.  Wishing you the best outcomes, and urging you to continue reaching out.

 

[Carol Lawson]

I have had “seronegative” MG since 2007, but only diagnosed in 2011 after 4 years of misery, by an expert in MG, after dealing doctors unable to make a clinical diagnosis, who only rely on the 2 blood tests given at the time.  I strongly object to our being labeled with a term, “seronegative” that somehow implies that this isn’t really the disease, because of the laziness of the medical community in their failure to test for the full complement of antibodies that can be present.  I was once able to arrange with a university conducting research to test my blood for other antibodies, for free, and the lug nut doctor I was seeing at the time, part of a large university hospital in NYC couldn’t be bothered to arrange the blood draw.  We need a more positive label for our rare form of an already rare disease, like “untested for MG” to put the onus back on the medical community.  We are excluded routinely from trials and we need a better position and benchmarks for trials.

[Carol Lawson]

One continuous hell.