u/Modgepodgepapi

Hi there! I’m not an RT, but I am interested in the field, namely because I have a neuro-muscular disease called Myasthenia gravis and have been helped by several really cool RT’s, because it’s a rare disease I’ve also met a whole bunch of healthcare workers, including RTs who know almost nothing about the disease, or its management.

I’m curious how much about MG is covered in your training, and if you’ve helped manage MG in an inpatient or outpatient setting how was that experience?

Also, what are some ways we as MG patients can better communicate with you to help you help us? It’s a weird and confusing disease for patients and providers alike and I’m always looking for ways to better help people treat and understand me.

I’m curious about anything else folks may know or think about MG who work as RTs!

Thanks for indulging my curiosity, and know that I appreciate you guys tremendously!

Hi all,

I am in a bit of a predicament.

I had dental work last Monday and haven’t felt right since. I’ve had increased severe symptoms as my mestinon wears off and at night. It’s like my baseline has shifted and I’m concerned. I’ve only had one crisis and it started similarly but I’m aware it could also just be an exacerbation.

When the mestinon is actively working I feel a bit better but I feel absolutely terrible about 2.5 hours after I take it.

My neurologist is on vacation until the 7th and I am very fearful of ending up in the hospital if he is away. (I’ve been treated so poorly in the past for seeking help for MG, even with a formal diagnosis I’ve had to beg and fight for them to believe me. It’s horrifying)

How do you know when it’s just a flare up versus the early stages of a crisis. How did your crisis come on? Was it slowly over a few days/weeks or was it all at once?

For now I’m resting, focusing on trying to keep my anxiety under control and writing down all my symptoms to share with my doctor when he returns.

Please pray for me/send good vibes. I do not want to have to stay in the hospital at all!

Thank you 💜

Hello!

I’m a hobbyist/nerd who would like to better understand how T-cells operate and what types of deficiencies are caused by T-cell dysfunction. What are some of the best resources for learning about this? Open to books/websites/talks, etc!

Thank you!

I’ve been researching antibodies specific to Myasthenia Gravis and I am looking for some information:

Is there ever a situation (excluding lab error) where a patient would have a positive MuSK antibody test, and not have myasthenia gravis?

I’ve combed through most of the available English-language literature on this subject and not found an answer to my question.

Thanks!

This is not someone seeking medical advice! I’m a student research assistant! (The AI kept flagging me)

I’ve been researching antibodies specific to Myasthenia Gravis and looking for some information:

Is there ever a situation (excluding lab error) where a patient would have a positive MuSK antibody test, and not have myasthenia gravis?

I’ve combed through most of the available English-language literature on this subject and not found an answer to my question.

Thanks!

Hi there,

I have had an ADHD diagnosis since childhood but took many years off of stimulant medication because I wasn’t sure if they actually helped me.
I began seeing a new psych and she’s great. I like and respect her a lot. And I CARE what she thinks of me.

I was recently put on Vyvanse 30mg after a failed trial of Adderall XR 20mg (absolutely intolerable side effects, ugh I hated it and threw the remainder away the second I got prescribed a different med.)

I took the new Vyvanse and felt absolutely nothing, zip, zilch, nada. I got impatient and impulsively took more to see how I felt. It worked and I had a great day! I felt calm, cool and collected and got things done I’ve been unable to even begin to take care of for months. No major euphoria or rush, just focus, better mood and motivation and organized thoughts. It was refreshing and honestly very life affirming.

However, I continued to take extra doses for several days and now will run out early. I feel so stupid for having done this, I know it could get me in trouble with my doctor. I know you shouldn’t self titrate. And I know the risks of higher doses of stimulants.

Now I’m in a pickle, I can go without them for a week, it isn’t the end of the world, but I’d prefer not to.

Should I tell my psych what happened? I know this runs the risk of me not being allowed stimulants anymore. I’m inclined to be honest or mostly honest (maybe tell her I accidentally took my meds twice and felt like the effects were very positive/the right dose for me) but I also am afraid of losing meds or having my new psychiatrist be upset with me or dislike me.

Has anyone else run into this before? How did it go for you? Did you tell the truth or just wait it out until your next refill?

Thanks for reading ❤️

Hi all,

I have been dealing with complex multi-system health issues for the last few years. I’m young, and have faced a lot of dismissal, medical gaslighting and poorly managed care. I am currently looking for recommendations for the following specialists (preferably in the Detroit area but I am willing to go further out if need be.)

-rheumatology
-neurology/neuroimmune
-gastroenterology
-doctors who are knowledgeable about disorders of the autonomic nervous system.
-immunology
-bonus points if you can recommend an excellent/motivated primary care provider.

I’d really appreciate hearing which providers have actually made you feel heard and respected, and how they approached your treatment and on-going care.

Thanks! 🙏