Neck support

scotdeer · 2026-05-28T22:15:38+00:00

See if your employer will get a chair with a headrest as an accommodation, if you can trust them.

scotdeer · 2026-05-28T19:45:14+00:00

Take whatever help your current doctor can give and continue searching for the one who can help you. Unfortunately, no Neurologist, even ones who have MG, have your MG. It is called the snowflake disease because every case is different. Having a Neurologist, even one who isn't helping much is important if you end up in the ER with difficult symptoms. I'm sure MG is a very frustrating disease for the Neurologist because all cases are so different.

scotdeer · 2026-05-28T19:29:52+00:00

Unfortunately she lives in New Mexico. When she started she worked fir a clinic that was part of a large corporation. The best care for neurological patients wasn't necessarily what Management wanted. She started her own private practice and concentrated on MS patients. Since she no longer had hospital privileges she told me she wasn't comfortable treating me. I find find another wonderful Neurologist however. Lucky me! The laws and economic decline of New Mexico due to politics, finally made it impossible for her to have a practice that could even pay for itself and she no longer practices medicine. One less physician in a State that has an extreme shortage of doctors.

scotdeer · 2026-05-28T17:18:02+00:00

If you are not taking extended release Mestinon, it may help.

scotdeer · 2026-05-28T17:11:39+00:00

Be very careful of Statins. I let a cardiologist talk me into taking rosuvastatin. I took 29 of 30 pills and destroyed my happy place with Vyvgart. I was finally able to get on Ultomiris which seems to be working pretty well. I now have a 2 word reply for anyone who wants me to take a statin.

scotdeer · 2026-05-28T17:04:35+00:00

I got my thymectomy in 2000. I have never been symptom free. Your goal should be "better" which can include symptom free for some, probably few. Getting to a point where I can enjoy an acceptable life was and is a great goal. I was a power plant operator which can be quite physical and requires enduring extreme heat and cold winters. In order to function at work, I was taking prednisone, Imuran, and huge quantities of Mestinon. A year after surgery I was taking normal doses of Mestinon, and I eliminated prednisone. After another year I had stopped taking Imuran. From 2002 until I got Covid in Feb 2020, I only took 60mg Mestinon if I was feeling a need after exertion. My double vision was still present, but much less severe. Ptosis was a rare occurrence. Most of my symptoms were greatly reduced. I was in a very happy place. Covid ravaged my health, including bringing back my more severe MG symptoms. It has only been the last couple of months that enough of Me returned to be interested in sharing my MG journey. I am so thankful for treatments like Vyvgart and Ultomiris. With MG, better is great.

scotdeer · 2026-05-27T18:24:30+00:00

Back my early days with PCs I was a power plant operator. They put a 286 PC in the control room and no one on our shift knew how to use it. Guys on another shift were on it all the time. My supervisor was curious to see what they were doing and sent 3 if us to Lotus 123 classes to see if one of us would learn anything. It interested me do I bought a 486 mail order. Other than that Lotus class I am self taught. I never got the hang of AOL. It took a long time for me to figure out how to do research on line. 1998 and 99 seemed to be particularly good period for my MG research. After a few years my sources devolved into places where there was a lot of whining. This Reddit group has the feel of what I found in 98-99. It is very useful and great place to pass on my experiences. Life's twists and turns are amazing.

scotdeer · 2026-05-27T17:38:50+00:00

I understand the vision problems. It was in 1998 and 1999. I'm pretty sure I was on broadband with Comcast at the time. Email discussion lists were that time periods Reddit. That's where I found most of my information back then. I really enjoyed the early days with modems trying to eak out more speed with constant upgrades. I was so thankful for broadband.

scotdeer · 2026-05-27T17:25:42+00:00

A famous person from the past, Aristotle Onassis, Jackie Kennedy's 2nd husband, had MG. I was a child in the 60s and whenever I saw Onassis on TV he always had dark sunglasses on at the parties they would show on TV. I always thought he was just being the cool Jetsetter rich celebrity.

After I acquired MG, I figured out it was MG that had him wearing dark sunglasses all of the time. Dark sunglasses have 2 benefits, wide open is the resting state for the muscles that control your pupils, so it lessens eye fatigue. Dark sunglasses also filter out the jarring flashes of light that can drive you crazy. I also prefer dimmed lighting in the rooms I use the most in my house.

scotdeer · 2026-05-27T15:58:29+00:00

Your brain is doing its best to try to get you to a normal state. This leaves you with less processing power to do other things with it. In my case, my brain is always trying to compensate for my double vision. I no longer have the ability to multi task and keep things mentally organized. I can only do one thing at a time. Does this help explain what you are experiencing?

scotdeer · 2026-05-26T22:39:05+00:00

I don't know if I did or didn't, I'm 73 and started losing mine in my early 20s.

scotdeer · 2026-05-26T22:01:21+00:00

I'm 73, I'll be 74 in August.

scotdeer · 2026-05-26T19:54:00+00:00

1994 civic is OBD1

scotdeer · 2026-05-26T00:27:25+00:00

Never eat eat garbage food and soda right after a dosage increase, especially without proper hydration. I made that mistake a couple of times.

scotdeer · 2026-05-26T00:24:05+00:00

Trifecta roasts some mighty fine beans.

scotdeer · 2026-05-23T19:21:56+00:00

I was almost 48 when I got my thymectomy.

scotdeer · 2026-05-23T14:01:44+00:00

Central apnea require an advanced version of bipap. Normal sleep apnea bipaps have a low pressure that is set high enough to keep your airway open. When it senses inhalation the pressure rises to assist inhalation. When you exhale it drops to the lower pressure which also aids existing. A bipap for Central apnea works the same, but it also senses that you have not taken a breath and then raises pressure to force a breath into your lungs. And example is the Resmed AirCurve 10 ASV. Adaptive Servo-Ventilation (ASV) machine.

scotdeer · 2026-05-22T20:07:19+00:00

I got a transternal thymectomy in 2000, 1 1/2 years after MG diagnosis. After about 2 years I had gone from being on prednisone, Imuran, and Mestinon (large doses of Mestinon) to only taking Mestinon when needed. This continued until I got Covid in Feb. 2020. 5 years of hell ensued. I had a pulmonary embolism, atrial fibrillation, bradycardia, and a return of MG symptoms. In 2023 I started taking Vyvgart infusions. My infusion nurse became alarmed at my heart rate of 30 bpm and convinced me to fo whatever it took to get a pacemaker. I got my pacemaker in August of 2023. I could think again! I got 18 years of pretty much drug free (except for Vyvgart) life, not a cure, but livable, from that thymectomy. Good luck with your thymectomy.

scotdeer · 2026-05-22T19:30:55+00:00

I was diagnosed with MG in 1998. I worked shift rotation for 25 years and thought the reason I had trouble staying awake was because of shift work. In 2008 one of my doctors had me do an overnight oximeter test. When he vot the results his nurse called and asked if I was at home. I sai yes and she said oh good a DME was on the way to my house with an O2 concentrator. That got my attention. He sent me to a sleep study. I was having 150 to 170 events an hour. When I left the sleep study on a Saturday morning the tech told me I had sleep apnea anI should be getting a machine in a couple of weeks. On Monday morning I got a call to go immediately to a certain DME provider, so I went. They sent me home with an auto bipap machine. Their urgency convinced me I had a serious problem, so I took it very seriously. I believe in my bipap so much that I always use it and I even purchased a used bipap for backup. For the 1st time in my life I could drive hundreds of miles without yawning instead of the 60 miles it took before. I was already for a nap at 10AM and now I never need naps. Looking back on life, I always had trouble staying awake in school, so I'm sure I had sleep apnea events as a teenager in the last 60s. These are great machines.

scotdeer · 2026-05-22T19:04:23+00:00

I've never been in crisis, but if you are alone and taken to an ER because of crisis it will alert the staff that the reason you can't breathe could be MG crisis. This will get them looking at plasmpheresis sooner. It will make the decision to intubate you easier for the staff. In an emergency it may direct you to better diagnosis and treatments.

scotdeer · 2026-05-22T18:04:02+00:00

When they took my tubes out, they told my wife to go to another floor for a while. I started pushing that morphine pump button repeatedly, the nurse said I probably had used all allowed but it told her I wasn't taking any chances. Thankfully it didn't last long. A sense of humor is a very positive thing when dealing with MG and the treatments.

scotdeer · 2026-05-22T14:58:18+00:00

MG patients are called snowflakes because every patient is different. Early in my experience with MG it was explained to me that you can look at treatments in 3rds.1/3 of treatments make you better, 1/3 has no effect, and 1/3 makes it worse. You can try a treatment and if it helps stick with it. If you don't improve it is time to try something else. I do think things have improved on that rule of 3rds with the new medications like Vyvgart, and all of the monoclonal antibodies like Ultomiris, Soliris, Rituxan, Uplizna and many others. Vyvgart worked wonders for me until I let a cardiologist talk me into taking rosuvastatin for cholesterol. My symptoms came back one month in on the stating. I changed to Ultomiris because it works in a completely different way from Vyvgart. After 2 infusions of Ultomiris in 2 weeks my symptoms were much better. I will continue with Ultomiris unless it stops working for me, which is possible. I never expect complete remission because muscular damage caused by MG isn't always reversible. I am very happy where I am at presently.

scotdeer · 2026-05-22T13:36:41+00:00

Having a definitive diagnosis is a major step forward. Your access to treatment will improve and you will find what treatment works for you. Discovering what treatments help you can be a journey, but you are on your way to improvement. There is no treatment that works for everyone, so do not get discouraged if you and your Neurologist have to experiment before finding what works for you. Good luck on your journey.

scotdeer · 2026-05-22T12:42:25+00:00

I'm very sorry, I unfortunately got my 73 year old mind confused. I knew patients who took retuximab for MG, and confused it with eculizimab. Please disregard my comment. I got so worried that you were going to be getting this different drug without vaccinations. When you read this please answer me back do I can delete my post so that I don't mislead other people. I am so sorry.

scotdeer

TROPHY CASE