-
Jonathan A replied to the topic Let’s Introduce Ourselves! Use 5 Words to Describe You/ Things You Enjoy in the forum Relationships & Social Life with Myasthenia Gravis 1 week, 4 days ago
I AM ME AGAIN !
On July 25, 2019, I started showing symptoms of very weak finger strength … then the droopy eyelids, competing eyeballs, and multiple rays with every street light being a Christmas star.
For eight long, suffering and weak months, no doctor could diagnose my ACUTE OCULAR and GENERALIZED MG, despite showing EVERY POSSIB…[Read more]
-
Jonathan A replied to the topic Pyridostigmine Side effect or allergic reaction? in the forum Healthcare and Myasthenia Gravis 2 weeks, 2 days ago
This is a big question for me. Since I was diagnosed, I continue to take the same dosage of 3 x 60 MGs = 180MGs daily of MESTINON and 2 of 500 MGs twice a day = 2000 MGs daily of CELLCEPT.
My symptoms started 7-25-2019 and after 8 months of CLUELESS DOCTORS not diagnosing me, I was finally diagnosed on 3-25-2020, by a third floor nurse…[Read more]
-
Jonathan A replied to the topic Describe the Moment You Were Undiagnosed With MG, but Realized Something Was Seriously Wrong in the forum Healthcare and Myasthenia Gravis 2 weeks, 3 days ago
I know the exact day. About 5:30 am on July 25, 2019. I needed to go to the end of my street to switch the metal pull up gates (one out and one back in) at the concrete irrigation box … to divert the west bound ditch water to the south bound ditch water to go to my street of yards. My fingers were too weak to pull up the metal slide…[Read more]
-
Jonathan A replied to the topic Managing Prednisone Weight Gain in the forum Hacks, Suggestions, and Tips for Living with Myasthenia Gravis 1 month, 3 weeks ago
The only way to stop the weight gain is to … GET THE HELL OFF OF PREDNISONE. You need to find a knowledgeable “old-school” doctor, who can taper you off of it successfully. I also was on 60 MGs daily, in addition to over 5000 MGs of other meds, daily … at home after I was released from the fifth hospital of 2020 on Black Friday 11-…[Read more]
-
Jonathan A replied to the topic Biggest Lesson You Learned This Year? in the forum Hacks, Suggestions, and Tips for Living with Myasthenia Gravis 2 months, 3 weeks ago
On BLACK FRIDAY, I celebrated my second anniversary of leaving my fifth hospital … after 8 months of not a single doctor being able to correctly diagnose either OCULAR MG or GENERALIZED MG. Even two NEUROLOGISTS, a NEURO-SURGEON, and an EYE DOCTOR failed me miserably. I was diagnose by a third floor nurse at the second of five hosp…[Read more]
-
Jonathan A replied to the topic COVID-19 Vaccine Booster Shot and Myasthenia Gravis in the forum Coronavirus (COVID-19) and Myasthenia Gravis 3 months, 2 weeks ago
On Black Friday this year … I celebrated my second anniversary of getting out of my 5th hospital due to getting diagnosed with MG, after an 8 month search. I take 180 MGs of MESTINON and 2000 MGs of CELLCEPT daily along with other drugs (5500 MGs daily) and I am fine. My new family doctor was scheduling his patients for WEDNESDAY appo…[Read more]
-
Jonathan A replied to the topic COVID-19 Vaccine Booster Shot and Myasthenia Gravis in the forum Coronavirus (COVID-19) and Myasthenia Gravis 3 months, 2 weeks ago
On Black Friday this year … I celebrated my second anniversary of getting out of my 5th hospital due to getting diagnosed with MG, after an 8 month search. I take 180 MGs of MESTINON and 2000 MGs of CELLCEPT daily along with other drugs (5500 MGs daily) and I am fine. My new family doctor was scheduling his patients for WEDNESDAY appo…[Read more]
-
Jonathan A replied to the topic What Is Your Longest Hospital Stay Due to MG Issues? in the forum Healthcare and Myasthenia Gravis 3 months, 3 weeks ago
I only have a quick moment to reply .. and will do longer later….
It took me eight long suffering and weakening months from 7-25-2019 to 3-24-2020 to be diagnosed with ACUTE OCULAR & GENERALIZED MYASTHENIA GRAVIS. Not a single doctor could diagnose a rare disease with 9 or 10 symptoms … and how all my symptoms could be ONE DISEASE. I was…[Read more]
-
Jonathan A replied to the topic Hearing loss in Myasthenia gravis in the forum About Our Forum/Welcome Lounge 4 months ago
Just a quick reply … as I just got back, and have a internet connection again.
To DEV … You do not need a LOCAL support MG group to join one. I belong to four MG SUPPORT GROUPS. I contracted MG on July 25, 2019 and on Feb. 4, 2020 after being undiagnosed for 6 months, I went to a BANNER HOSPITAL URGENT CARE Center to find KNOW…[Read more]
-
Jonathan A replied to the topic Steroid Alternatives in the forum Hacks, Suggestions, and Tips for Living with Myasthenia Gravis 4 months, 1 week ago
I am a construction worker also, and supposedly OLD (I remember where I was and what I was doing when JFK died on that Friday).
I am finally ME AGAIN, and am in MG REMISSION now. Age is a state of mind. I don’t feel OLD, now that my symptoms are in REMISSION, except for ACUTE ONSET INSOMNIA … but those damn doctor offices all keep using YOU…[Read more]
-
Jonathan A replied to the topic Is MG hereditary? in the forum Myasthenia Gravis Research, Scientific News, & Clinical Trials 4 months, 1 week ago
It would say YES !!! But the question is still out there in LIMBO … with some say yes .. others say no, according to what I have read and been told by doctors. No one knows shit about MG. It was never taught in med school apparently. It took me 8 months to be diagnosed. No doctor could diagnose me with MG despite having every symptom,…[Read more]
-
Jonathan A replied to the topic Hearing loss in Myasthenia gravis in the forum About Our Forum/Welcome Lounge 4 months, 1 week ago
I am very interested in my hearing loss too. The hospital doctors gave it to me, at the first of 5 2020 hospitals …. so I had 100% hearing and speech loss for 4 months … and my hearing is only to 70% back.
I started having MG symptoms on 7-25-2019 … and no doctor could diagnose my disease. I was finally diagnosed with MG on 3-24-…[Read more]
-
Jonathan A replied to the topic What Is Your Favorite Halloween Candy? in the forum Hacks, Suggestions, and Tips for Living with Myasthenia Gravis 4 months, 2 weeks ago
For handing out candy, I selected in the past something that look great and was cheap … such as Tootsie roll pops or milk duds. But then in the past six years, there has been less and less kids coming … with the last one … pre COVID, the last count was only 8 kids.
So I had to try EAT all the left over candy that I got stuck wit…[Read more]
-
Jonathan A replied to the topic Describe Your Journey With MG in 3 Words in the forum Hacks, Suggestions, and Tips for Living with Myasthenia Gravis 4 months, 2 weeks ago
For me … saying only three words is about IMPOSSIBLE … but I am in remission now, after eight months and five months in five hospitals ….. searching for a reason for my 8 or 9 symptoms, and getting the REAL TESTS and treatment finally.
Not a single doctor who saw me or tested me could diagnose me. I was finally diagnosed by a thir…[Read more]
-
Jonathan A replied to the topic Steroid Alternatives in the forum Hacks, Suggestions, and Tips for Living with Myasthenia Gravis 4 months, 2 weeks ago
Get your doctor to taper you off Prednisone as soon as you can. For eight months, no a single doctor or hospital could diagnose my acute ocular and generalized MYASTHENIA GRAVIS. I was finally diagnosed by a third floor nurse at the second hospital. She recognized my 8 or 9 symptoms and talked the doctors into a neuro consult and t…[Read more]
-
Jonathan A replied to the topic Accurate Count of People With MG in the forum Myasthenia Gravis Research, Scientific News, & Clinical Trials 7 months, 1 week ago
The TRUE ANSWER to how many MYASTHENIA GRAVIS patients are diagnosed and alive is much GREATER THAN THOUGHT.
I regularly try to keep up with my MG bookmarked websites, and attend by ZOOM my four MG support groups at every opportunity. I heard or read that there are 60,000 MG patients in the US and 12,000 patients in the UK.
It took me 8 months…[Read more]
-
Jonathan A replied to the topic Multiple Diseases with MG in the forum Healthcare and Myasthenia Gravis 7 months, 1 week ago
I have been in REMISSION from my ACUTE OCULAR MG and ACUTE GENERALIZED MYASTHENIA GRAVIS since 11-27-2020 … after I left my fifth hospital of 2020. No a single doctor was able to diagnose MG .. despite having every single symptom. I was finally diagnosed by a third floor nurse, who had been in the wards long enough to recognize my MG sy…[Read more]
-
Jonathan A replied to the topic Mestinon Side Effects in the forum Hacks, Suggestions, and Tips for Living with Myasthenia Gravis 9 months, 3 weeks ago
So far this discussion has mainly talked about MESTINON, as well as PREDNISONE that is a more dangerous side effect for me, that they were able to taper down and KILL.
I have been in remission for 15 months now. I have always taken 180 MGS (3 of 60) daily of Mestinon/Pyridostigmine Bromide and 2oo0 MGs (two 500 in am and two 500 in pm) daily of…[Read more]
-
Jonathan A replied to the topic Any Tips For Traveling Internationally With MG? in the forum Hacks, Suggestions, and Tips for Living with Myasthenia Gravis 10 months, 1 week ago
I am wishing you well on your travels … and will be praying for you. I have been in remission for a year now and take 2000 MGs daily of CELLCEPT, 180 MGs daily of MESTINON, and was tapered and weaned off that nasty STERIOD PREDNISONE … which had HORRID SIDE EFFECTS. So if you are not on CELLCEPT, ask your doctor … I have had no relap…[Read more]
-
Jonathan A replied to the topic Mestinon Side Effects in the forum Hacks, Suggestions, and Tips for Living with Myasthenia Gravis 10 months, 2 weeks ago
Find and ZOOM with local California MG support groups, who have ZOOM meetings monthly. They will have a list of the most MG trust worthy doctors near by. The support group moderator keeps a list for her members of the nearby GOOD and the UGLY (nonMG savy doctors). I belong to four groups and ZOOM with them regularly.
See also University of C…[Read more]
- Load More
I found this study interesting! https://www.ncbi.nlm.nih.gov/pmc/articles/PMC5718710/#:~:text=Hearing%20loss%20in%20patients%20with,is%20rarely%20noticed%20by%20patients.