u/kafkaesque555

Thankfully, I don’t experience outright swallowing difficulty with my gMG. However, I’ve been suspecting some mild bulbar weakness lately, because I cough excessively after every single meal due to a feeling that food is stuck in my throat. Also, sometimes I feel like swallowing once isn’t enough, and like it’s just harder for food to pass through.

Might be a silly question, but since it’s not “trouble swallowing” outright, I wanted to ask if anyone else experiences this and has to cough a TON to clear their throat after every meal. I’m newly diagnosed and this has never happened to me before, so I assume it has to do with MG, but I just wanted to ask. Thank you in advance for the input!

Trigger warning for angry rant, lengthy post, and describing emotional abuse from medical professionals.

Also, a disclaimer that I’ve met many wonderful healthcare providers in my life, many of whom are wonderful humans that have helped me, and some of whom I’m close with in my personal life. I’m also aware of the horrible shit that healthcare workers go through on a daily basis, and how the medical field (in the USA especially) is continuously getting harder on them. No need to lecture me on any of this in the comments.

However, my sympathy can only go so far, because a shitty environment or extreme job stress do not excuse taking it out on patients, many of whom are scared, vulnerable, or in awful places in their lives.

Within the last year or so, I started to become very sick. I was having trouble walking, was experiencing blurry vision and trouble swallowing, could barely move, and couldn’t even take care of myself. Skipping ahead, I was recently diagnosed with a rare, disabling neuromuscular condition that is poorly understood. But back then, my whole life fell apart… but this isn’t even the worst part. The most traumatic memories for me aren’t even of when I became disabled… but when I had to deal with doctors.

I know I probably sound like an asshole here, but in real life I put a big effort into being kind to everyone I meet and am a generally pleasant person. So anything I complain about isn’t because of my behavior- in fact, I’ve gone above and beyond at every appointment to be as “perfect” of a patient as possible (down to overthinking what to wear to make the perfect impression) in order to get them to take me seriously and want to help me, but they NEVER did. Time and time again.

These are the two things I’ve been encountering at almost every appointment: 1) The constant diagnostic overshadowing and obsession with labeling everything “anxiety,” and 2) some of them having unbelievable egos, often resulting in them making these subtle comments that imply that I’m stupid, clueless, or just imagining my symptoms.

Here’s an unbelievable story: When my extreme muscle weakness was coming on, I went to a doctor (a new PCP) who asked me to walk across the room and perform various tasks for a basic neuro exam. I had a positive Romberg test, was losing my balance, and my legs were shaking from exhaustion. A week earlier, I literally was doing yoga and regular 5ks, and that day I could barely walk. She referred me to a neurologist, but when I read my medical notes later, she said “Patient has a history of anxiety. Given unclear etiology of symptoms, her symptoms are likely secondary to anxiety.”

Tell me this: Since WHEN does anxiety cause trouble walking? Shaking limbs? Extreme weakness exercise intolerance? I have no idea how this person got an MD. It’s so incredibly stupid that I can’t even imagine how they got through medical school. I’m aware that stress and anxiety are real problems that can cause physical symptoms, but doctors will always default to this to explain EVERYTHING, especially when you’re a young woman like I am. All of my symptoms have been blamed on anxiety and it’s fucking ridiculous. It’s become a perfect trash can diagnosis for when they don’t know what to do with you.

In addition to this one example, I’ve had multiple borderline abusive experiences recently that have traumatized me. I had to go to the ER because I was having trouble breathing (which is a real thing with my condition- my diaphragm can weaken and make me experience air hunger and shallow breathing, which can become deadly in some cases). I waited 14 hours to be seen and given oxygen, and when the attending finally saw me, he yelled at me and told me I was wasting hospital resources, and that I should have known better to come here. He was so incredibly horrible (I don’t have words to describe it- just believe me, this man was evil), and I was in shock so I began to cry, from both exhaustion and fear. Then these two nurses saw me crying and sneered at each other like they thought it was funny. This moment was one of the most humiliating and dehumanizing of my life. I was lying there, struggling to walk and to breathe, feeling my body falling apart day by day, and I wait 14 hours for help, and THAT is how I was treated. This was at supposedly one of the best hospitals in the country. Then, as if this wasn’t insulting enough, I received a bill for $22,000 despite receiving absolutely no treatment.

I won’t get into detail of everything I’ve experienced in the last year, because I could write a whole novel, but every time I need to see the doctor now, I am so nervous beforehand and struggle to contain my anger and hatred. I mentally prepare every single time to be not believed, to be belittled and dismissed, to be told to see a mental health professional, to basically be told that I must be making it up. One provider recently (a specialist that was supposed to be really good) told me that he thought I was over-exaggerating, and that there’s a “huuuuge discrepancy” between what I describe struggling with and what he saw in the office. Gee, if you can’t fully see how disabling my condition is in a 15 minute appointment window, that must mean it’s not real! In addition, he thought that multiple positive test results I’ve had meant nothing- “I think they are all false positives…”

And then at the end of the appointment, he gave me this super stuck up smirk when he saw me using my cane and asked, “Why are you using that?” As if I hadn’t just spent the whole appointment describing the specific ways in which my disability is impacting me, many of which are difficult to reproduce in a small 15-minute time window. And this wasn’t the first doctor to belittle or question my need for a mobility device.

I’ve tried to seek counseling, but that doesn’t help either. My hatred for doctors has become so extreme that I don’t even trust mental health professionals. I think they secretly think I’m stupid and crazy, just like how all of the other doctors have treated me. One therapist told me basically that having no trust in her will result in no positive progress for our appointments. Which, to be fair, is totally true, and I told her that she’s right. But I can’t bring myself to trust anyone anymore. I know it’s a trauma response, but I just feel like they’re all “out to get me.”

I don’t know why I’m posting this other than to send this out into the void because I feel so traumatized by healthcare, and it feels like nobody else understands. I’ve been criticized so many times by even friends and family because it sounds ungrateful to them. Which I get, but it’s so hard to describe if you haven’t had medical trauma. The gaslighting and belittling is such a specific infuriating experience.

I know I need to change my attitude, but it’s hard to heal this wound when it gets ripped open every single appointment. Sometimes I will have a positive experience where I feel really heard and helped, but the very next time something will happen that will rip me open again. I’m experiencing so much awful shit and feel like I’m living in hell, and I don’t know when I’ll ever be able to heal.

It’s been an extremely frustrating week for me. First, I saw a specialist that’s supposed to be really good (according to whom, not sure). It was awful.

I could tell that she judged me from the outset… she had this weird, condescending smirk when listening to me describing my symptoms. I feel like because she saw “anxiety” in my chart (a diagnosis from a long time ago, though I still do take a low dose of an antidepressant for maintenance), she decided that I was making it up before she even met me.

Upon having me do the neurological exam, I clearly explained that though my limbs almost always feel heavy and weak to some extent, I can power through briefly for the stupid “push on my arm, now pull, now do this and that” kind of test they always do. Then she had me hold my arms up and see how long I could keep them there… I couldn’t do it as long as other patients, she said, but she said that I was “giving up” earlier… like, what?

After a few moments like this where my body did shake or get fatigued early, she still decided that I had a “perfectly” normal exam. Then she said “I think the severity of symptoms you describe don’t match at all what I’m seeing in the office. There’s a huge discrepancy.” I felt like I was fighting to explain myself- that it’s the kind of thing that’s hard to see in a 20 minute appointment, and I happen to be having a slightly better day, and I actually live in my body whereas this appointment is just a small sliver of my life.

I knew I would get nowhere with this doctor, but it still really got my spirits down. She continued to dismiss me time after time… when I told her that I experienced shallow breathing, she said “You’re just hyper-aware and trying to find symptoms where there aren’t any.” I don’t know why I didn’t just storm out right then and there. I am a people pleaser and have a hard time standing up for myself. Right at the end, I grabbed my cane, and she looked at me with a weird expression and said, “Why are you using that?” Like I didn’t just tell her that I walk extremely slowly, and it feels like I’m walking through water, and I can’t walk long distances, so I need it for support…

She also said that she didn’t believe my positive SFEMG, saying “It’s a sensitive test, but it’s too sensitive in this case.” What???

Meanwhile, I’m waiting for my chest MRI to come back to see if I have thymic hyperplasia or a thymoma. I tested positive for cancer-related antibodies (which this doctor didn’t believe either, saying they were false positives), and I saw a friend of a friend of mine who is an oncologist, and he said that he is unfortunately expecting to see a tumor somewhere, and I likely will need a PET scan as well.

Sorry for the rant. I don’t know why I’m posting this, other than to just send it out into the void because I have no where else to put it. I’m so sick of being gaslit and dismissed by doctors. They seriously believe what they want to believe, and if you’re a young woman like I am, it’s easier to dismiss a patient than believe them.

Hi all, I (26F) had a sudden onset of general limb weakness following a bad cold in January. I also experience occasional trouble swallowing and shallow breathing. Long story short, I had a positive SFEMG but negative antibodies.

My doctor also put in a paraneoplastic panel (to check for antibodies associated with a presence of tumors in the body), and it came back positive. I have 1:100 titer anti-zic4, low-positive anti-NMDAR, and low-positive ganglionic neuronal AChR (not the same as the muscular AChR antibody). Of course, now I’m terrified.

I know thymomas are more rare in seronegative folks, but I guess I’m wondering if anyone else had tumor-related antibodies that helped them discover that they had MG or a paraneoplastic syndrome associated with a thymoma or other tumor?

I just got my pelvic MRI back and there’s no teratoma (associated with the anti-NMDAR antibodies), so now I’m going to worst case scenario of SCLC due to the anti-zic4 antibodies (though it’s extremely rare in non-smokers my age).

Any experiences, thoughts, or insights would be greatly appreciated.