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I've Heard A Lot About TCell Treatments. Sounds Promising. One Treatment. GOD Please Let This Be A New Cure. Hoping The Trials Go Smoothl
Keep us posted🙏🏿🙏🏿
Can GMG Effect The Heart Even After A Thymectomy And For Patients Not Checking Positive For Antibodies?
Atrial Fib occurred at time diagnosis, but was not diagnosed until years later. MG 2010, AF 2013, and currently CHF 2022.
So a lot of ppl have heart issues in addition to; however, sometimes when the lungs do not get enough air, the heart beats faster to try and compensate. That’s what I’ve been dealing with.
Any Experience With Zilbrysq? Not In Formulary Yet Here.
Cindy I am not sure. 🤔
Personal Question.......
Hard to ask question here..... Since my diagnosis journey has been long and several different doctor opinions, unnecessary expensive tests, being sent from specialist to specialist, etc.... I finally received a MG diagnosis earlier this year, but.... my neurologist asked that I also get with a larger medical facility for future treatment options, etc. in which I did waiting a long six months to get in. When my appointment finally arrived, the Doctor completely disregarded my ongoing symptoms… read more
Question For Those With Triple Seronegative MG: Have You Tried Any Of The Newer MG Treatments Released In The Last Few Years?
I'm seronegative Rosie and my doctor put me on Pyridostigmine 30 mg, but so far, I haven't noticed any difference in my oMG symptoms. Sorry.....wish I could give you a more positive answer. 🤪
How Are You All Dating With GMG
Hi Johanna
Right on the mark. I read some of the comments on MGteam to my wife and it does help describe what is happening to me and to others with MG. Sharing our individual information and… read more
Gaslighing In The Neurological Community A Serious Issue. The Lack Of Updated Information And Knowledge Is Staggering!
I live in Cincinnati, Ohio and struggling with the gaslighing.
I grow up believing that doctors know everything. However, during my life I’ve learned that doctors are people like the rest of us.
I’ve learned to question doctors and deciding to move on or to say… read more
What Does These Labs Mean? ACHr Binding Ab 0.03 Nmol/L AND ACHr Blocking Ab 18% With Thymoma
The lab results you provided indicate the following:
- AChR Binding Antibody (Ab) 0.03 nmol/L: This value is quite low. Typically, around 85% of people with myasthenia gravis have elevated levels of… read more
A Question For You All. My Neurologist Strongly Suggests That I Avoid Other People. Avoid Dining Out, Shopping, Church, And Other Places.
I assume the azathioprine is the reason, but what does your doctors tell you? Our immunity systems are seriously weakened so I see the reasoning, but... I'm not much of a hermit, but learning to be one.
You guys are in a tough situation for sure. I feel for you and the frustration. This is a tough disease with no real answers. What I have found that helps is to exercise moderately every other day. I… read more
Would A Thymectomy Relieve My Symptoms? How Long Is The Process? What Would Be My Possible Prognosis?
I've been diagnosed since 2013, with ocular MG. Not much info back then and all my docs were absolutely perplexed with me. I was put on mestinon idk what the dosage was back then. I followed all the doctors advice. My neurologist didn't have this info back then. I couldn't find much at all. I was told so many things that it became water in a bucket. All I kept was there was no cure. And you have a tumor in your thyroid. Docs back then said your thyroid shouldn't be active. That's it. I just had… read more
Hi Johanna, I had a thymectomy in 2005. I had all of the same symptoms. The thymectomy helped with most of the symptoms. I'm in remission right now. I normally have to go in the hospital once or twice… read more
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