Has anyone gone to the health fairs out on by the MGFA Foundation? I was thinking about going to one but I don’t know what do expect? submitted by /u/Civil_Source_5898 [visit reddit] [comments ..read more

Has anyone been diagnosed with both? I’ve read there is a correlation and since weaning down off my steroids I’ve started getting significant fasciculations in most parts of my body that also seem to worsen with activity and improve with rest ?‍♀️??‍♀️ Of course this has also sent me into an ALS spiral, (although they appear to be episodic with activity rather than progressive) and i don’t see my neuro for another month. I suppose I’m looking for any real world examples of cross over between the two conditions. TIA ☺️ submitted by /u/Low-Reflection-9767 [visit reddit] [comments ..read more

submitted by /u/Distinct-Way-1521 [visit reddit] [comments ..read more

Hi all! I’ve started Rystiggo on May 1st. Today is May 3rd and I have a severe headache that whatever I take it will not take the headache away. It literally feels like someone is beating me in the back of my head repeatedly non stop with a hammer. I am freezing cold and have the chills. Though I know these are side effects, I was wondering if anyone else is on the rystiggo infusion and if so do they have these side effects or any at all?? I think my best bet is to stop the medication and get back on vyvgart where I had none of these issues. submitted by /u/Safe_Razzmatazz3927 [visit reddit ..read more

Any feedback on these? On and off swallowing exacerbation symptoms with mestinon still and weakness etc ptosis. Waiting to take tests for other antibodies still submitted by /u/Individual_Sink_7716 [visit reddit] [comments ..read more

Hello, I am debating moving to another state or not. I am on Prednisone, IVIG, and imuran . The only thing holding me back is I am worried that I won’t find a neurologist that will prescribe the same treatments or they will refuse to treat me all together bc I know how neurologists can be. on top of that it takes 3 months to get into see most neurologists anyways So basically the predicament I’m in is I want to move to a different state this summer but I do not want to sacrifice my health and treatment in any way . If anyone has any advice on the best way I could transfer doctors and continue ..read more

Had a phone appointment with a clinic this morning and they’re prescribing presdidone 60mg and then 40 etc. went to an ER was given round of IVIG that I couldn’t tolerate and solumedrol IV for a day and sent off with mestinon. I am unable to swallow foods and ER is now just ignoring me. What do I do please somebody help tell me what to do this is a new diagnosis. Nuero at ER said no steroids but small clinic doctor prescribed….. what do I do submitted by /u/Individual_Sink_7716 [visit reddit] [comments ..read more

Can’t swallow food unless it’s apple sauce or similar… sent home from ER tonight with mestinon. Which I already am taking every four hours….. What do I do? I have not been referred to a neurologist yet. The neuro at the ER is the one who said to just take extra mestinon.. submitted by /u/Individual_Sink_7716 [visit reddit] [comments ..read more

Access the link below to catch up! https://myasthenia.org/Events/2024-national-patient-conference-tampa-fl submitted by /u/LogPuzzleheaded3878 [visit reddit] [comments ..read more

Let me preface this by saying that I don't have Myasthenia Gravis. I'm a Long Covid/ ME/CFS patient. Been sick with it for several years. The reason why I'm making this post is that Efgartigimod is being trialed for Long Covid, and the results are coming out next month. If the results are good, I'm going to try to get my doctor to prescribe it off label. He's very receptive to experimental medicine, and has prescribed me HIV antivirals in the past to see if they worked, so he'd likely be willing to prescribe Efgartigimod if the Phase II trial results are good. What I'm worried about is the co ..read more