Been ghosted by my neuro's PA
Early this year, just before I got my monthly shot in the eye, I mentioned to my retina specialist that my left eye would suddenly go droopy and I would feel strongly pulled to the left. He told me I should get checked for myasthenia gravis. I didn't get in to see the PA at the neurology office until June. She told me she was pretty sure I had it and was going to do blood tests. I got the results through Quest but didn't have a follow up appointment until six weeks later. On August 2nd, I got my official diagnosis. The next appointment they gave me was for September 7th because I had to see both the PA and the actual doctor who was MIA at my last visit.
I was started on 30mg mestinon three times a day. I took two of the three pills that day while I was awake.
When I got into bed, I had the worst muscle spasms of my life from my toes to my knees in what seem like every muscle. I sat up most of the night in my recliner trying to find a position that didn't trigger a cascade of spasms.
I took three pills the next day with a five hour gap instead of the eight hour that was prescribed. No spasms but had gastro problems even though I ate practically a complete meal with the dose. I noticed a slight increase in stability and arm strength. Just enough to be aware of but not enough to offset the tummy problems, snot constantly pouring out of my nose, and having to pee every five seconds.
The next morning, after I took the first dose, I had a flare up of every symptom I had been experiencing plus quite a few more. I called to let them know that I could not tolerate the drug and asked for an alternative.
A week went by with no word so I called again and left yet another message with the receptionist since the nurses never answer the phone and there is no voice mail. I was told they would get back to me. That brings us to today.
The receptionist actually grabbed the PA's nurse for me and she got on the phone. The nurse caught the PA as she was coming out of an exam room and talked to her.
When she came back on the line she said that if I wanted a different med, I could go to the University of Utah and they would send a referral there.
It was made clear I was done there. UofU is a teaching hospital and has all the newest treatments. Unfortunately, it is over three hours away in good traffic. Salt Lake never has good traffic even at 3am.
I live in Podunk, Idaho, and there are few neuros around here. Every other one requires a referral.
I will finally be getting my CT scan tomorrow but my symptoms have gotten so much worse in the past month that I have a lot of trouble conveying food to my mouth using any method and my stamina and stability are so poor, I cannot walk more that a few feet at a time.
Everytime I have been referred to a specialist in the past few years, it takes more than a month to even be called to schedule an appointment and then that appointment is always months out.
I am sorry for the long post but I feel so abandoned and hopeless right now!
, Hoping things are better and you don't have to hit 7 neuros before someone takes you seriously. Hope you have a cane and have gotten to MGFA videos. Have to see neuro in Chicago, really hard to get there if I don't have medical cab which Medicaid covered as I can drive only 45 mi relatively safely. It is terrifying to know local MDs don't care enough to learn the disease.. even at the Magnet hospital. Hope you are on bipap, helped me so tremendously. May next year be awesome. Thanks for all the advice! I will put it to good use!
Back when I was diagnosed, I was told to let my sleep apnea doctor know so he could determine the best treatment. I had an appointment with the pulmonologist yesterday. He is quite familiar with the neuro I had gone to and he had some choice words. Apparently, everyone gets treated like that and he said I would likely never even see the actual doctor, only the PA.
He told me I needed treatment now and fast tracked a breathing test, a titration and sleep study, and texted the neurologist friend of his next door personally to try to get me seen ASAP. I felt so overjoyed I hugged the man.
When I got home from my appointment, an email from University of Utah told me they had received the referral and wanted me to start the long and involved process of info gathering and at the conclusion of my footwork, it would take three weeks to set up an appointment. I kinda think I will be putting that off for a while!
Glad to hear back from you! I'm so very glad you're finally getting somewhere! Please keep us posted on how things are going for you or if you have other questions or comments! Best wishes! - Janice (Myasthenia-Gravis.com Team)
I would underscore everything Janice said and more. My husband is the MG guy, and I am just his advocate and best fan. You do seem to have had a savvy eye doctor--good! But the lack of follow-up is so frustrating. It may be that your symptoms are progressing much faster than most. My hubby went through almost two years of doctors and tests before his firm diagnosis and treatments were established so we do understand frustration. I cannot add much to Janice's advice but do want to underscore her concern and support. This can generalize to breathing and swallowing issues quickly, so be persistent in your need for a neur-muscular specialist. The CT scan eliminates one of the possible causes, but if it were negative there are several other paths to similar diagnoses and you don't want to be in the position of waiting a long time between each step. And in the interim, keep in touch with this community. We are not doctors of course, but there is lots of background information here that can help you when you are working with your medical team. Juliana (Myasthenia-gravis.com team)
I am so very sorry you have gotten the run-around – literally! First, you have an ophthalmologist that’s certainly on-the-ball! Before I continue responding to your other comments, I want to let you know if at any time you feel your condition is turning urgent, please go to the nearest E.R.
The Mestinon does upset the stomach a lot! I took it for a while after my diagnosis. I found the only way I could tolerate the drug was to take it with dairy products. Even when I ate a full meal, if I didn’t have some kind of food that would actually coat the stomach, I would have severe cramping and diarrhea. The dairy taken with my Mestinon stopped that.
Later on, I was trying to eat healthier, so I tried to wean myself off whole milk. I went to 2% & mixed it half 2% & half whole milk, then gradually decreased the whole milk until I was drinking only 2%. I was at a point where I could go down another step towards my goal, but before I had a chance, the pain & diarrhea returned. I found that I needed all the fat in whole milk, pudding, ice cream, etc. Try some dairy with it and see if that helps you.
Also, with the Mestinon, most drugs work the best when they are taken at regular intervals with few variations. Try to take your medication as directed & it may work better for you. It may take a little while to work effectively. I’m not sure how long, we all react to the same drugs differently.
I know heat & cold extremes are not tolerated well if you have MG, but I did find that a heating pad or warm water helps my muscle cramping most of the time. However, if you can’t tolerate the heat, just try massaging the area. Sometimes walking will help the leg cramps. However, it’s difficult to do that if you have difficulty walking. I’m in a powerchair, so when I get leg cramps, I use my walker to walk a little. That helps most of the time. I also get hand & finger cramps, usually when I’m doing dishes or something similar. I’ve already got my hands in hot water, so I sometimes have to stop a while & massage them or just let them rest for a while. Usually my cramping hits after a tiring day.
Have you noticed the cramping after a busy day or a restful day? When do they hit the most? What have you found that works for relieving them?
As far as the “snot”, I’m sure most of us have that issue at some time or another. MG causes us to produce more mucous. I get it in my throat & have to clear it frequently. (I also have asthma, which also produces mucous.) My nose runs almost constantly. My eyes tear up for no reason. That’s all part of MG. Check with your doctor before trying any new treatment, but when my nose bothers me a lot, I use some saline nasal spray, which helps, especially when my nose gets crusty inside.
Now your doctors! Unfortunately, many physicians, including neurologists, are unfamiliar with MG. I’ve had to teach many of them. I’ve even gone to a pharmacist because they had me on way too many drugs. It’s imperative you find a neurologist that knows how to treat MG & since you are a great distance away from Salt Lake City, establish a really good relationship with a family practice physician near you, in case of emergency, as well. Sit with him/her & discuss what he or she knows about the disease. What do they know about the drugs you have to take? Become informed yourself of symptoms & various treatments available. You also need a list of drugs that should not be taken with MG or some of the drugs used in the treatment. Have a family member or a good friend become an advocate for you. They should also learn everything you have to learn. It’s best if you can be your own advocate, too.
Keep a diary of all your symptoms, treatments, etc. Take that diary with you every time you see your neurologist. Write down pertinent information you discuss with your neurologist.
I did some research about your estimated location & here’s what I have found. Idaho has no neurologists trained in MG, nor do they have any support groups available. I also looked in Wyoming. Nothing there, either. Your closest is Salt Lake City & the next, I think, is Las Vegas. You may have to drive the 3 hours needed to get there, but keep in mind, once your MG is under control, your visits will become fewer. Every neurologist is different in how they treat their patients & how often they want to see them, but I’ve been on once per year visits for several years now.
I really think Salt Lake is your best option & getting a really good doctor in family practice locally. Make sure communication lines are open with the 3 of you – 4 counting your advocate. MG is a disease that should never be taken lightly. It can be serious to life-threatening, or it can be fairly mild or anything in between, especially with treatment. Who you see needs to understand that!
I’ve written quite a lot here, but I really hope I’ve given you some ideas & information to make things better for you. There is so much more information you need to learn. We have shared many of our experiences. I hope you will continue to utilize our experiences & share yours so together you & everyone can get the help they need & we can make our rare disease known to many more people. I’m sharing some links to get you started! There are many more!
Myasthenia Gravis Foundation of America (MGFA)
What Qualities Should I Look For in a Myasthenia Gravis Doctor? (myasthenia-gravis.com)
How Is Myasthenia Gravis Treated? (myasthenia-gravis.com)
How Do I Connect with People Living with Myasthenia Gravis? (myasthenia-gravis.com)
Living With Myasthenia Gravis (myasthenia-gravis.com)
What to Expect When Starting Mestinon for Myasthenia Gravis (myasthenia-gravis.com)
Hope to hear from you again! Good luck & best wishes! - Janice (Myasthenia-Gravis.com Team)
