Robert Davidson
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I was diagnosed with MG about 16 months ago. Fortunately, when the Nurse Practioner at my doctor saw me, she immediately ordered an ambulance to take me to the hospital. The Neurologist on call was a specialist on MG (and ALS). After 9 weeks in the hospital receiving multiple treatments, I was released and now for the last 8 months have been told I’m in remission. I’m on 2.5 mg of Prednisone (considered a maintenance dose), 50 mg of Imuran 3 x per day, 60 mg of Mestinon 4 x per day, and 1 mg of Glcopyrrolate 3 x per day. Plus IVIG every 5 weeks. He wants to wean me down to an IVIG every 12 weeks which will take about 2 years, and eventually discontinue the Prednisone, as the Imuran should have taken over the treatment. Apparently the Imuran can take well over a year to be fully effective. Except for the 4 hours for the IVIG, my life is essentially back to normal. I see the Neurologist every 3 months.
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I’m on 5 mg of prednisone plus monthly IVIG. I have a Neurologist who’s specialty is MG, plus ALS, at a major medical center/hospital in San Francisco. So, I got lucky when I went to The ER to have him assigned to me. The problem with felling like you are in a lab experiment is that no drug works for every person. And what doesn’t work for you may work fine for someone else. My PCP told me that drugs are FDA approved if they prove to help as little as 5 or 10% of patients and it’s never 100%. Which, of course, means they are ineffective for 90 to 95% of patients. So the doctors often have to try different medications, or combinations, to attempt to find what works best for you. For my part, if I’m with a specialist in my condition, I have no problem trying different medications. My Neurologist told me that up until the discovery several years ago of prednisone helping MG patients, MG was essentially a death sentence.
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Doctors and nurses have seen every conceivable, and many not conceivable, forms of dress. They just don’t care. So. I dress comfortably, usually shorts and t-shirt in spring, summer and fall.
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It sounds like you have a generalist Neurologist, not a specialist. You didn’t say where you are located but my suggestion is to find a Neurologist who specializes in MG and similar conditions. All Neurologists know about MG, but very few are a specialist in it. As an example of a specialist to seek out is Dr. Johnathan Katz in San Francisco.
Here is what Sutter health shows as his profile.
Jonathan Katz, MD
1100 Van Ness Avenue Floor 6, San Francisco, CA 94109
415 600 9604
Dr. Katz studies amyotrophic lateral sclerosis (ALS), myasthenia gravis, neuromuscular diseases, pain management, peripheral neuropathy, poliomyelitis, radiculopathies, and spinal muscular atrophy. He leads clinical trials of pharmacotherapies to slow the progression of ALS; device trials; a study of the NeuRX Diaphragm Pacing System to support patients with diaphragm weakness; and observational studies of factors affecting disease progression.
Dr. Katz and others at the Forbes Norris Center work with researchers at the University of California, San Diego, to study mutations in RNA binding proteins that cause neuronal dysfunction and death. Dr. Katz and colleagues at CPMC (California Pacific Medical Center in San Francisco) will collaborate with Cedars-Sinai Regenerative Medicine Institute on new stem cell and gene therapy techniques to treat ALS patients. He is President of the ALS Research Group—an international ALS research collaboration. He sits on the medical advisory board for the Myasthenia Gravis Association.
When I was in CMPC hospital for nine weeks, several doctors said Dr, Katz has patients coming from all over the country for MG treatment. He took me from critical to remission in 10 months. He was going to enter me in a clinical trial he was part of, but I showed good improvement. Not that I’m saying to contact him, although you could, but I’m suggesting you seek someone with similar listed specialties in a University or large teaching hospital in your area.
My PCP told me to always seek doctors affiliated with a major teaching hospital or a university hospital as they are vetted for acceptance and know about current clinical trials you could possibly be entered in.
Also, Google is our friend. Google Myasthenia Gravis specialists in (your City) or go to https://myasthenia.org for Physician Referral List – Myasthenia Gravis Foundation.
Bob
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In my case, I had lost 75 pounds over about 18 months (from 245). My PCPO did many scans to identify if it was cancer; weight loss being a common symptom of cancer, but all scans were negative. Then I started having droopy eyelids, some breathing distress, and weak, drooping neck so went to my PCP. Her Physician’s Assistant immediately sent me to the ER. I was referred to a Neurologist who I was told is one of California’s specialists in MG. He thought I had mild MG for about 18 months prior but without bad enough symptoms to go to a doctor. He stated that even mild breathing distress causes the body to “massively” burn calories and that is why I was losing so much weight even though I was eating full meals. He also sad that people who lose a lot of weight due to cancer or other diseases look sickly and I didn’t.
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I started pretty quickly having droopy eyelids and head, and went to my PCP doctor (she was able to squeeze me in the next day) and she sent me directly by ambulance to the ER at California Pacific Medical Center in San Francisco. As soon as I arrived, the Triage nurse guessed it and then the ER doctor (not a Neurologist) diagnosed it by using the ice bag test. Then the on-call Neurologist immediately referred me to one of her office colleague Neurologists who specializes in MG (as well as ALS). I was admitted and stayed in the hospital for 9 weeks getting three IVIGs and two plasma flushes along with Prednisone. I was very lucky to be in one of the two top hospitals in San Francisco, second only to University of California San Francisco. Interestingly, my Neurologist said I most likely had a mild case of MG for about 18 months, just without major noticeable symptoms that would have caused me to go to my PCP.
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I had been losing weight rapidly for 18 months. About 75 pounds. From 245 to 168. My PCP did all scans to rule out cancer. But I continued with weight loss even eating full meals. When I went to the hospital with MG, my Neurologist asked if I have had to sit or raise up in bed at night for breathing comfort. I had been doing that for about the 18 months. He said that he suspected I had a mild case of MG for those 18 months because even a slight difficulty in breathing causes the body to massively (his term) burn calories so that’s why I was burning more calories than I was taking in. When he got my MG under control in the hospital, I began gaining weight and am back to 206.
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My Neurologist told me about a relatively new drug, been out about 4 years, called SOLIRIS It’s a prescription medicine used to treat adults with generalized myasthenia gravis (gMG) who are anti-acetylcholine receptor (AChR) antibody positive. My Neurologist came close to putting me on it when I was in the hospital for 9 weeks. Unfortunately it is very expensive. he is one of only 2 doctors allowed to prescribe it to hospital patients. The cost, before insurance, is $775,000 per year and once started must be taken for life. But apparently it does work.
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77 yo male. First MG symptoms appeared June 2021. Breathing difficulty, double vision, drooping eyelids, couldn’t hold my neck up, weak arm and leg muscles. The Hospital Emergency Room in San Francisco referred me to a Neurologist who specializes in MG. Several doctors at the hospital said he is an expert and has patients coming from around the country for treatment. He is part of a current clinical study on an MG drug. I was in the hospital for 9 weeks. Had 3 plasma flushes and 2 IVIG infusions, plus medications. Was discharged when breathing and muscle strength improved, but other symptoms hadn’t. I’m currently on 12.5 mg of Prednisone (down from 50 mg), Imuran 50 mg, Mestinon 6o0 mg 4 times a day, and Glycopyrrolate (Robinul) 1 mg. I had an at home IVIG infusions a month ago and all of my symptoms dramatically improved; no more drooping eyelids or double vision, no more drooping neck, can now reach over my head with no problem. , leg muscles improved. not as tired. Basically I can do everything I could pre-MG but in moderation. Find a Neurologist who is a specialist in MG, most are not but can do basic treatment. Sounds like you need a real expert.
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Intravenous immunoglobulin (IVIG) is <b>a compound that consists of immune globulins (immune proteins) that are usually administered into the bloodstream</b>. It is used to treat patients with severe or rapidly worsening myasthenia gravis (MG). The treatments, at least mine, were with donated globulins. MG is a rare disease. There is no one doctor that handles all the issues. In the hospital, and now post discharge, I saw an endocrinologist, lung (breathing) specialist, and my cardiologist as well as an IR doctor who installed and monitored my PICC line for nine weeks. All under the overall management of my neurologist (who also helped with the double vision.)
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My Neurologist specializes in Neuro-Muscular, MG, and ALS diseases. I’ve been told by other doctors that he has one of the largest MG practices in San Francisco. I was diagnosed 10 months ago when I was sent to the ER with breathing issues. I was in the hospital for 9 weeks during which I had four plasma flushes and two IVIGs. I was on 50 mg of prednisone (plus Imuran and Mestinon.) Upon discharge I had 5 weeks of home IVIG but he had started reducing the Prednisone to 40 mg Over the last six months he has reduced the Prednisone from 40 mg down to 20 mg, then 10 mg, then 7.5 mg, and now 5 mg (considered low dose.) He said the weaning was to allow the Imuran to take full effect which takes approximately one year. The goal is to eliminate the Prednisone in another 2 – 4 months.
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Hi Elisa, my Neurologist, who specializes in MG and other neuro diseases, used the term “Remission” with me even with some remaining neck weakness. I’ve never heard anyone use remission as a synonym for “cured.” I Googled “What is the medical definition of Remission?” Here’s the answer – “<b>A decrease in or disappearance of signs and symptoms of cancer</b>. In partial remission, some, but not all, signs and symptoms of cancer have disappeared. In complete remission, all signs and symptoms of cancer have disappeared, although cancer still may be in the body.”
So, just like MG is incurable doesn’t mean you have symptoms. Your neurologist sounds like they have a medical degree but not an English degree.