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| Myasthenia Gravis For support and discussions on Myasthenia Gravis, Congenital Myasthenic Syndromes and LEMS. |
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| Myasthenia Gravis For support and discussions on Myasthenia Gravis, Congenital Myasthenic Syndromes and LEMS. |
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02-25-2022, 08:59 PM
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Been bouncing somewhat in and out of fear today on the news that my neurologist is planning to take away my Mestinon if I don’t pass an EMG. That is only proof she will take . She said she would retest after my daughter and I pushed her try during appointment in saying I have other things not MG. New diagnosis she added to my record is Diffuse Spondylosis. And Mild Congenital Spinal Stenosis.. she did put in my Restrictive Breathing Disease only because I gave her he overnite oxygen reports. They were a year apart and first said I need supplemental oxygen. It I met Medicare requirements. The 2nd one doesn’t say that because I have been getting Solumedrol but they want to deny that’s true. What a mess. I only have 3 months of refills. This woman is NOT capable of getting a positive EMG. I used to have an eye doctor who would prescribe for me. The arthritis diagnoses are being pulled in from my pain clinic I discovered and they are based on one MRI of my brain at least 10 years ago that does not say arthritis but says brain lesions. I was seen for severe Auras before I knew what an Aura for a Migraine was. I don’t get migraine headaches. I get Ocular Migraines. The neurologist projected a lot of pain on me I don’t have to fit her agenda. Sculptor 44
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| "Thanks for this!" says: | Atticus (03-09-2022) |
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03-01-2022, 09:36 PM
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I am required to do a health status assessment annually. I asked for an accommodation given what talking does to me and it’s limits. My medical insurance said no nothing beyond what was done 2 years ago. Then it was just broken into 2 -1 hour sessions.. I honestly don’t know how to get thru it.. It is more important than ever tho they still aren’t providing homecare. I want a shower aide again so so much. Sculptor 44
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| "Thanks for this!" says: | Atticus (03-09-2022) |
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03-08-2022, 08:14 PM
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Had Pain Clinic Trip today which was a hard push as I more needed at least a Solumedrol shot of 125 units. Struggling worse than usual. Doing the paperwork for the new helper to start tomorrow. I am not sure I can do meeting. Daughter will. My ability to speak is worse. A lot of feeling trapped around this. Sculptor 44
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| "Thanks for this!" says: | Atticus (03-09-2022) |
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03-23-2022, 03:13 PM
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Doing better today as the IVIG headache and flu like symptoms are mostly gone. My daughter is doing the meeting with our new helper as I am not up for that. It is harder to eat enough when I am weaker. But the drawbacks at hospital made food worse. After enjoying a big serving of scrambled eggs first morn the nurse oh that’s not gluten-free. I couldn’t have grilled sweet potato for same reason. When I got gluten-free menu it was so limited. Seriously I said to nurse I just need some meat! I love my veggies but meat too. I feel somewhat newborn in my body. I ate much better today even some spinach. Sculptor 44
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