AnneL
Forum Replies Created
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Shock, Depression, Acceptance
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Hi, I’m another SeroNegative patient. Fired 3 Neurologists, even after getting a definitive diagnosis. I didn’t like their attitudes or felt the treatments were helping me. Keep searching until you find a professional Neurologist who listens and who cares.
We are special and we’re not getting the attention we deserve with the current research or the drug companies. I am basically surviving, but want to feel a whole lot better and get some kind of a normal life back. It’s just not fair.
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I refused any vaccine. I felt it was too risky for me and I probably wouldn’t build immunity anyway. I’ve had COVID twice now. The 1st time, I was given Regeneron and felt so much better within 12 hours. No hospitalization and it took about 2 weeks to completely get over it. That was in Dec. 2022. Now, June 2022, I have COVID again! This time, I was given the new oral Paxlovid. It took longer to work, but did finally relieve all but lingering respiratory symptoms by day 7. Again, no hospitalization.
COVID wasn’t as bad as I had anticipated compared to a Norovirus episode which hit me in March. That almost put me in the hospital and took a good, long 6 weeks to recover.
I hate being Immunocompromised and living life in a bubble for fear of catching “something”.
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So sorry to hear of your terminal illness..really, really sorry. As if having MG is not bad enough. Which medication did this to you and how long were you on it?
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Maureen…good choice with the University based Healthcare System. Do not hesitate to call the Neurology department and request to be called in case of another patient cancellation. I’ve done this every couple of weeks until they work me in. Maybe the department scheduler sensed my desperation?? lol
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That’s very interesting that your Neurologist would test for esoteric antibodies. I’ve never heard of that one. Can you block out personal info, but post your test results? What other antibodies were you tested for by Athena Labs?
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Maureen…I’m sorry this is happening to you. We are all at the mercy of our Neurologists and finding a good one is a challenge. Why does this new Dr doubt the diagnosis of his previous colleague? If you are able to, try to be seen at a University Healthcare System. They generally are well versed in MG diagnosis and the latest treatments.
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I, too, was looking forward to Vyvgart entering the market. I patiently followed the phase 3 clinical trial, which showed excellent results with seronegative MG patients. Thank I was shocked when the FDA approved its use in seropositive patients only. My Neurologist was also shocked as he is treating a few seronegative MG patients and this could have been a game changer.
I was so upset that I called the Vyvgart Customer Support line and voiced to them that those of us who are seronegative, are very disappointed and feel ignored. I explained the MG community communicates heavily on various forums and are all saying the same thing…disappointment and feel our patient population is being ignored. The representative, who was well versed and dedicated to the Vyvgard support role, promised she would get the message to corporate.
I’m bummed, but my Neurologist told me he’d keep a close eye on results with other patients, but more importantly, it must start being approved for reimbursement by our insurance companies and Medicare part D. Who knows how long this will take.
It may help if others start voicing disappointment directly to the company, as I have. Squeaky wheels and all that!