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Finding a Primary Care Doctor to Oversee Myasthenia Gravis
Do you have a primary care doctor? I am curious both ways, whether you do or do not see one and why.
The specialist who supervises my myasthenia gravis doesn’t label themself a primary care doctor. They don’t prefer me to use his name when I see other specialists or have other appointments. Still, they ask that I run all proposed medications by them first before taking them to make sure they mix with MG, even after a primary’s approval.
My MG professional believed a primary care doctor would serve a good purpose as an overall eye on my treatment and oversee all medications. However, the first medicine a primary care doctor I tried attempted to put me on was magnesium, which may provoke MG symptoms.
Do you see a benefit to a primary care physician with MG or see it as leading to more complications most often?
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10 Replies
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Personally, for the past 20 years I didn’t use a primary care doctor. Then MG presented itself about 8 months ago. It used to be a hassle trying to get an appointment with a specialist without a primary care specialist. Now medicine seems to have changed in my area of the country. It now seems ok that I don’t have a primary care doctor. Although they continue to ask. I am not against going to see a GP when it is appropriate and necessary. But going to a GP when I know a specialist is needed seems like a waste of time and cost. We have centralized medical records on a national basis. Thus all my tests and medicines can be reviewed by any doctor I use. If a specialist doesn’t see a recent test they need to do an evaluation they will order it. So for me no I don’t wish to have a routine check in with a GP. By the way – I have a dentist, cardiologist, neurologist, dermatologist, otolaryngologist and ophthalmologist all taking care of me.
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I have a primary care doctor. He does all my yearly physicals, flu vaccines, prescribes my thyroid meds, treats minor illnesses,  etc. . I don’t think a neurologist would do any of that. I feel you should have a good primary doctor to stay healthy. They will do all of your yearly routine screening.  It’s much easier getting appointments with primary care too. They have not harmed me. (I fear dental work much more)
I still run every medicine by my neurologist on the portal system and only listen to her. My primary will then change to what she says if needed. -
I believe it is essential to have a primary care doctor for overall health and for care coordination. Most of my visits are with specialists, but I am in a integrated health care system that keeps my primary informed as to current happenings with my health.
In terms of prescribing of medications, I make sure they coordinate with pharmacist and/or neurologist so that I’m assured that there are no contraindications with the medication. I also carry with me the MGFA produced card that lists medications that should be avoided with MG. In addition, I am able to access a website that has a “medication interaction checker”, and will alert me if something prescribed is contraindicated.
There are also health issues that need to be addressed that are not in the realm of neurology expertise and I feel that is is best to start with your primary care doctor.
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It took me 8 months to be diagnosed with MYASTHENIA GRAVIS on March 24th of 2020. No doctor ever was able to diagnose my MG.  I was finally diagnosed by a intelligent floor nurse at the second hospital …. who recognized all my symptoms from some of her other floor patients. She got me tested, treated and on IVIG.  My Neurologist of record … at that hospital ….. who has never met me ….but whose name is on my MG pill bottles … does not currently do patient appointments.
The “CHINESE PLAGUE” arrived in Arizona after I arrived at the first of my three hospitals Feb 4, 2020  (to June 12, 2020.) I did not know that outside my hospital window … a PLAGUE from CHINA .. existed ….. as a friendly hospital nurse “described it” … when I almost choked to death when that same nurse attempted to stick a WAY TOO LONG stick … down WAY TOO FAR … in to a dry sore throat that had not eaten in three months (doctor mis-diagnoses did not recognize MG swallowing issues .. so I was Peg tubed for 4 months) The nurse finally told me about the CHINESE PLAGUE” after I bitterly complained about her stick. It was late May 2020.
So my “in name only MG doctor” would not see my body in person. Since my MG nurse diagnosis on 3-24-2020, I have had only one MG doctor Zoom (the therapist translated as I could still not hear or speak due to Antibiotic side effects for 4 months) and then 2 phone call appointments from same MG doctor since my release from third hospital on 6-12-2020.  I was not ready to drive 15 miles through traffic out and 15 miles back …. in my MG condition …. if the doctor decides to SEE HIS PATIENTS AGAIN in person.
So I googled and found a new MYASTHENIA GRAVIS NEUROLOGIST close to me in Tempe Arizona. He is WONDERFUL.  He is not like my other doctors …. who as another MG patient said ….. “Look at you  like you had three heads” or were “CRAZY”. He understood and knew every symptom that I had repeated for the last year …. and did not look at me strange … and write in his website patient portal that I  “was a POOR HISTORIAN”.  He KNEW every medication that I was taking and was badly trying to pronounce.
He is GOLDEN ….. and you must find your own great MG doctor. He will give you printouts about medications you must avoid.  He gave me the closest to a physical that I have had in 30 years. He tested my arms, hands, calves, neck, reflexes, pushing back arm strength, vision.  He even used a knee rubber mallet and a check ears/nose medical device … that I had not seen in over 30 years.  He was older, than all my other referrals … but was a REAL DOCTOR …. well educated … and knew his medical field and the right questions to ask a patient.
One month later, I had a physical from my new primary doctor for United Healthcare….. as I had to switch my health care package from Cigna Healthcare when Arizona and Cigna could not reach a contract for 2020.  The men’s physical for a new patient .. the following month … was pretty much a “minimal bust”.  I wore a baseball jersey with front buttons. I undid the buttons. He used a stethoscope, felt my abs, and that was about it. No instruments, no hammer, no ear, eye nose, mouth look see.  His nurse already did the weight … which was 10 pounds higher than in the morning without clothes.  Also she did the usual “white jacket blood pressure” reading three minutes after I was in the exam room and still talking/explaining my visit with legs crossed … so “her OFFICIAL BLOOD PRESSURE READING”  was over 20/20 points higher than my personal blood pressure cuff reading I recorded  … when I left.    So my first annual, new patient physical was rather a “non-event” and I doubt he even recognized my healing chest PEG tub hole, my deep slit throat wound (TRACH), my IRRIGATION/DEBRIDEMENT procedure from my swollen septic bursitis infection, or my back wounds from the first practicing hospital NEUROLOGIST that took “9 attempts” according to Banner documents downloaded …. to complete MAYBE a lumbar tap.
SO GET THEE TO A …. real order …… practicing MYASTHENIA GRAVIS NEUROLOGIST. HE IS GOLDEN!!  … and will protect you from other clueless doctors, who believe quantity of patients is better than quality of patient care. I am still getting blow back from my other doctors .. who poo poo my feelings, when I try to explain my immune system is TOAST due to over 2000 mg of immune supressant drugs  …. and NO …. I do not want any invasive “searches’ and “tissue samplings” for some unspecified/undeclared needs of yours …. when four other doctors have me on five blood thinners and anticlots … even though I have O positive thin blood … and a clear Cardiac Catheterization test. I can not afford to fall out of MYASTHENIA GRAVIS REMISSION … due to 3 to 4 days of blood coming out and possible infection …. on your whim … that my immune system can not protect me from.      P.S. I already died once from a bad choice of using anesthesia … on a patient that already was exhibiting suppressed breathing.
I have bought and read …. since my MG diagnosis … Ebay purchased books by several MG patients and MG doctors, who also were themselves MG patients.  Some have said that you need to have a primary care doctor ….. be your QUARTERBACK to referee your care, your meds, and your cross interactions/side effects  …. which I have not seen really happen yet in my case with over 5000 mg of pills and a syringe daily of 14 different meds.  Other MG specialists say. Research as much as possible, check out support groups, read websites, such as this,  and TRUST YOUR GUT … and REACH WAY DOWN … and see WHAT YOUR BODY IS TELLING YOU.
CHOOSE YOUR DOCTORS WISELY.   YOUR LIFE DEPENDS ON IT !!!!!
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I have a GP, but in January this year, he tested positive for covid a day after my wife and I consulted him. We then both became ill. We had two covid tests which were negative, and were told by another doctor to take paracetamol and vitamins, D, C and Zinc. Within 10 days we were very ill and were rushed to the ER in need of oxygen. We were tested again before being admitted, but the test was positive, and we were turned away as they had no covid ward. It was a Saturday night, and attempts to get help from my neurologist or any other doctors were fruitless. The covid ward in our general hospital was full.
Somehow we got through the night, and again I struggled to find someone to help us. Fortunately, an old English doctor who knew us found out from the hospital that we were covid positive. He then called us, checked our OS levels which were very low and offered to arrange an ambulance to take us to a hospital in the city. We asked him to help us, and he then arranged for us to be admitted to a covid facility which was not yet completed or open. My wife and I were admitted there in an empty warehouse, with new beds, oxygen and a nurse to take care of us. The doctor arranged the medication etc, and a kind family provided meals for us. Without his help we would probably have died.The point of all this is that there are situations which arise and specialists will not help. This is why I believe it’s good to have a GP who is familiar with our general health.
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I think I responded to this on another post. I have a primary doc who hung the moon. Without his guidance my life likely would have been over. I tell him he is “pilot in command”. He was there at every turn even dragging in his PDR which was reassuring to me. He was surrounded by people that were known by him. He was an ER doc and has a sense of humor. When I sincerely wondered if things were just in my head, he dispelled those notions. Once when spilling out all my maladies he asked me if my teeth itched? Then we both laughed. On one office visit he personally wheeled me to my car in a wheelchair. I was green with a blocked bile duct sludge that he treated. There was not a stone but he is a wise man. Actually his name is Wise. I refer to him as doc “Won-mug” from “Ally-Oop” days. I think you need a mechanic you can trust personally. He knows and remembers my right saphenous vein which is still clotted and always painful and he knows Mazithra Greek goat cheese. Â
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I have a GP that oversees everything but my MG which is handled by a wonderful Neurologist. I am lucky to be close to John Hopkins Hospital in Baltimore and my neurologist is on staff there. All of my doctors get results from blood tests, MRI’s, EKG’s and such including my cardiologist and pulmonologist.
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I have a primary care doctor. He is the first to admit he is not informed enough to oversee my Mg treatment. That is the arena of my neurologist. The only connection to my Mg that the primary care doctor has is providing the prescription authorizations for all my medications. I think it is important for at least one doctor to know and prescribed all of my medications to prevent dangerous interactions.
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I have had excellent experiences having a separate primary care physician and neurologist. What makes it a seamless experience is that they are in the same major provider (UCHealth in Colorado). The physicians work for the same employer and have shared access to my records and to each other, and I can easily see everything and communicate with them via the online portal.
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I’m just astounded at some peoples terrible experience with doctors.  It’s scary actually. I had some bad experiences but not nearly as bad as some here. I also found a large well respected medical center in New York City and have all my care coordinated there. Shared medical files are key to getting the best care.
My son who works at a big hospital tells me stay away from emergency rooms and someone I work with wife is a doctor in an large medical center ER and they actually track the HIGH Â number of mistakes made in the ER and resulting damage or death to patients there. -
And sometimes you get lucky. Yesterday, I had surgery that required general anesthesia. I cautioned the anesthesiologist that I am a myasthenic. He replied, “No problem, so am I.”
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