My fight against MG has been fierce, but having a friend like Anita Longoria helped me know what to expect and how to attack it. Being a Marine Sgt I have never thought of giving up...she gave me the knowledge to go along with my determination. I have a lot to be thankful for. Thank you Anita from one of your biggest fans.
A am a woman and was diagnosed with MG at 75 after two and a half years of complaining of multiple odd symptoms which did not come present at the same time. Old age, hypochondria depression were suggested! Was finally diagnosed in 2016. Am reasonably stable… it is hard to make people understand that the symptoms can come and go several times throughout the day. I am having DV as I try to type this and my head feels too heavy for my neck to hold up. Symptoms started after an infection with Chikungunya virus. it was so frustrating telling my story over and over. Getting even a rare disease diagnosis was a relief, I was not mad, it had a name. Good luck going forward with your life.
Thank you for your story. I actually started my journey with MG at the Optometrist and the ice cube test! She suddenly got very serious she didnt tell me I had it, but we needed to rule it out. She sent a letter to my PCP telling him exactly what blood tests she needed him to order for me. He did and the results came in and he became very serious and helped expedite getting me to a Neurologist. My story continues from there to surgery, thymoma, cancer, radiation. It has been a whirlwind. I was 60 at the time of diagnosis. I identify with so many of your same symptoms. Thank you for your story. Do you have an online support group?
So sorry you had to go through all this so early in life and find out we had a lot of bad doctors out there, but Im happy you made this video because I went thru some of these same symptoms for years and had different neurologist for years and crazy diagnosis for over 10 years and pills that made me sicker. I was in my late 50's when things went south and they thought I had a form of Parkinson's and I took test after test and went thru 4 doctors till I found one who stuck with me and referred me to USF in Tampa because I was so week and had trouble getting up and he thought I may have ALS for testing, so after many test and 4 more doctors the neuromuscular doctor said I was coming back for MG testing after he noticed the trouble with my eyes and I finally was diagnosed with gMG after testing positive for LRP4 antibodies...at 68 years old. I had one doctor tell me I was faking the whole thing, I almost put my foot, well you know, I've been on Mestinon and IVIG every 2 weeks and am doing much better but still slid back to the darkside on ocasion but grateful for finding out I wasnt crazy. Thank You for doing this video because it can help a lot of people.....Good Luck to you
Thank you so much for sharing this, Anita. I hadn't met anyone else who was first misdiagnosed with a work injury (my arms also suddenly stopped working and I was told it was a repetitive user injury from work). It didn't take me as long to get diagnosed, but it did take almost ten years (maybe more though, I similarly think I've had symptoms from childhood, not just since the arms thing). This makes me feel less alone. ❤️
I’ve been going through 4.5 yrs of this type of hell. Just recently went to a Neuro muscular doctor of a prestigious medical system and school. I may finally be getting a diagnosis.
Hang in there. I have had MG for five months now. It has been a terrible journey. I actually went to a Neuro surgeon and begged for help. The medical professionals just gave me the run around. The thing I have learned with these doctors and hospitals is squeaky wheel gets greased. All they want to do is refer you to someone else and hide behind their keyboards and monitors.
@@terrythompson3903 that is what I’ve experienced so far, hating specialists for this and that right now. My EMG was negative. That is both good and bad for me for obvious reasons. Doc said she wanted time to think on my case and advised me to circle back to Neuro Optomology. Got an appt with John Hopkins Wilmer Eye Institute on Dec 9, 2024, today is 10/26/2024. Have been messaging back and forth with Neuro Muscular doc (she is so responsive and says she doesn’t mind my messages…did I find my champion doc finally?). I asked her if prednisone would help my double vision and help us figure out if it is muscular or nerve issue. She doesn’t want to prescribe it this early and I’m not sad about it! She did say trying Mestinon for 30 days would do the trick and it would let us know if we still need to go through the Myasthenia path. Started 1/2 pill yesterday and need to increase every three days until I get to 3 full tabs, 1 tab at each meal. I’m feeling defeated and sad and just trying to focus on my hobbies so I don’t go down the rabbit hole.
Ça résonne fort chez moi… Très très fort. A part que je n’arrive pas à dormir à un autre endroit que dans mon lit. Hasard ou pas ? Je le saurai peut-être dans quelques mois après mon premier EMG ?
My fight against MG has been fierce, but having a friend like Anita Longoria helped me know what to expect and how to attack it. Being a Marine Sgt I have never thought of giving up...she gave me the knowledge to go along with my determination. I have a lot to be thankful for. Thank you Anita from one of your biggest fans.
A am a woman and was diagnosed with MG at 75 after two and a half years of complaining of multiple odd symptoms which did not come present at the same time. Old age, hypochondria depression were suggested! Was finally diagnosed in 2016. Am reasonably stable… it is hard to make people understand that the symptoms can come and go several times throughout the day. I am having DV as I try to type this and my head feels too heavy for my neck to hold up.
Symptoms started after an infection with Chikungunya virus. it was so frustrating telling my story over and over. Getting even a rare disease diagnosis was a relief, I was not mad, it had a name.
Good luck going forward with your life.
Thank you for your story. I actually started my journey with MG at the Optometrist and the ice cube test! She suddenly got very serious she didnt tell me I had it, but we needed to rule it out. She sent a letter to my PCP telling him exactly what blood tests she needed him to order for me. He did and the results came in and he became very serious and helped expedite getting me to a Neurologist. My story continues from there to surgery, thymoma, cancer, radiation. It has been a whirlwind. I was 60 at the time of diagnosis. I identify with so many of your same symptoms. Thank you for your story. Do you have an online support group?
So sorry you had to go through all this so early in life and find out we had a lot of bad doctors out there, but Im happy you made this video because I went thru some of these same symptoms for years and had different neurologist for years and crazy diagnosis for over 10 years and pills that made me sicker. I was in my late 50's when things went south and they thought I had a form of Parkinson's and I took test after test and went thru 4 doctors till I found one who stuck with me and referred me to USF in Tampa because I was so week and had trouble getting up and he thought I may have ALS for testing, so after many test and 4 more doctors the neuromuscular doctor said I was coming back for MG testing after he noticed the trouble with my eyes and I finally was diagnosed with gMG after testing positive for LRP4 antibodies...at 68 years old. I had one doctor tell me I was faking the whole thing, I almost put my foot, well you know, I've been on Mestinon and IVIG every 2 weeks and am doing much better but still slid back to the darkside on ocasion but grateful for finding out I wasnt crazy. Thank You for doing this video because it can help a lot of people.....Good Luck to you
Thanks for your post.
Thank you so much for sharing this, Anita. I hadn't met anyone else who was first misdiagnosed with a work injury (my arms also suddenly stopped working and I was told it was a repetitive user injury from work). It didn't take me as long to get diagnosed, but it did take almost ten years (maybe more though, I similarly think I've had symptoms from childhood, not just since the arms thing). This makes me feel less alone. ❤️
I’ve been going through 4.5 yrs of this type of hell. Just recently went to a Neuro muscular doctor of a prestigious medical system and school. I may finally be getting a diagnosis.
Hang in there. I have had MG for five months now. It has been a terrible journey. I actually went to a Neuro surgeon and begged for help. The medical professionals just gave me the run around. The thing I have learned with these doctors and hospitals is squeaky wheel gets greased. All they want to do is refer you to someone else and hide behind their keyboards and monitors.
@@terrythompson3903 that is what I’ve experienced so far, hating specialists for this and that right now. My EMG was negative. That is both good and bad for me for obvious reasons. Doc said she wanted time to think on my case and advised me to circle back to Neuro Optomology. Got an appt with John Hopkins Wilmer Eye Institute on Dec 9, 2024, today is 10/26/2024. Have been messaging back and forth with Neuro Muscular doc (she is so responsive and says she doesn’t mind my messages…did I find my champion doc finally?). I asked her if prednisone would help my double vision and help us figure out if it is muscular or nerve issue. She doesn’t want to prescribe it this early and I’m not sad about it! She did say trying Mestinon for 30 days would do the trick and it would let us know if we still need to go through the Myasthenia path. Started 1/2 pill yesterday and need to increase every three days until I get to 3 full tabs, 1 tab at each meal. I’m feeling defeated and sad and just trying to focus on my hobbies so I don’t go down the rabbit hole.
Thank you, Thank you. Thank you for sharing this.
Ça résonne fort chez moi… Très très fort. A part que je n’arrive pas à dormir à un autre endroit que dans mon lit.
Hasard ou pas ? Je le saurai peut-être dans quelques mois après mon premier EMG ?