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| Myasthenia Gravis For support and discussions on Myasthenia Gravis, Congenital Myasthenic Syndromes and LEMS. |
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01-31-2022, 11:34 PM
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so I will have to gather records and test info to carry with me since it is now clear the University of Iowa certainly won’t diagnose me with a muscle disorder much less MG or protect and improve my quality of life. I asked her 3 times so how do you explain my diaphragm paralysis. She has this thing of ignoring questions no matter how important. Finally because I was upset she answered well people can be injured say like in a car accident and damage that nerve. That on the heals of her bringing up Arthritis could make me weak I had had it. Forgive my frustration but boy is she now worse than she was. I was always clear she wasn’t at all good at reading bodies but this proof. She had forgot I had Covid And that Mayo diagnosed the diaphragm issue. I had brought the overnight oxygen test data sheets and gave them to her but she didn’t acknowledge the one that said I qualify for oxygen. I had sent them before. She rattled of what she considered proof I don’t have MG. And now I am trying to not think about the danger it would create if she stopped prescribing my Mestinon. I started to cry briefly in the appointment and said how much I need my Mestinon to walk and breath. I take solace in how afraid the Pulmonologist was last May at Mayo Clinic when he showed Jen and I the 2 X-rays a year apart and how my disfunctional diaphragm is moving up into my lung space making lungs smaller and yes when I lay down that gets worse and feels awful. And at end that doctor asked me if I could try to stand . Was in wheelchair that day. My daughter pulled me up and I stood but quickly collapsed. My daughter pleaded at end saying you I wake at 3am many nites knowing mom may call and has fallen and broken her leg. Of course my doctors only sign of caring was to offer another Nerve testing. And she blew off the need for a new MRI which the new Mayo neuro wants. I am still digesting all this and because I am sicker I will go to ER not Pulmo this week cause I can’t trust Iowa City docs to do the right thing. It is possible I have Covid again or I realized a former infection of CMV could have come back. I notified my Iowa City pulmo about blue toes and realized there are chilblains involved too. Also told GP practice. I am watching feet better. I just have to note the main issue for my neuro was supposed to be my right leg and how it is starting to “give out” at times with pain. She didn’t examine my leg. Honestly that is infuriating. Sculptor 44. o
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02-02-2022, 11:45 PM
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I found a documentary with a title that so speaks to me “Life Overtakes Me”. As I watched the preview I remembered when my Internist suggested in her notes I had Failure to Thrive when she admitted me to the hospital after I had been forced to do a early appointment to keep getting my pain medication. She was worried by my coloring among other things. With so little Mestinon and fluids and food in me of course I am in bad shape. They came with a bed cart at her office to take and my body went into a horrible spasm. I didn’t know about the failure to thrive thing for weeks I just knew people were being odd to me at times. I seriously didn’t have the failure issue it was just me on a very bad morning. That was a few years ago. I sure don’t get my pain meds thru her anymore. Honestly I love to eat but one of the signs that I am getting worse is not eating as much. I work hard at eating enough and that being nutrient dense. But boy is this sicker body making it so difficult. Sculptor 44
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02-05-2022, 02:38 PM
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Realized that the One good thing about my recent Neurologist appointment disaster is that my Daughter REALLY saw her for who she is. Even I learned she is in a worse place meaning the doctor than I could ever expect. I am sorting thru who could I continue to get Mestinon from if she stops prescribing. She asked me once awhile ago if I like and use the Mestinon cause of my Sjogrens Syndrome. I know I gave he an incredulous look and said no! I have severe dry symptoms that are called Sjogrens of and on. Sculptor 44
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| "Thanks for this!" says: | Atticus (03-09-2022) |
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02-20-2022, 07:40 PM
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Hi. So I got a copy of my Neurologist locally notes written for recent appointment. I had to find out how bad the bad appointment was. Doctor was angry in tone. In the 2 new diagnosis she discussed is arthritis related. She is shifting to things other than Myasthenia. So this week I am gonna see if she will write my next prescription for Mestinon which unfortunately I will need in about 30 days. First time in years I don’t trust that she will prescribe it. This is part of the fear I talked about since I saw her. My daughter is kinda in denial about where neurologist is at. At least the Neurologist at Mayo heard me when I said without my Mestinon I will be in a bed in a nursing home. She said ok stay on it. That was in 2017. I need to do a closer read on the recent note. I skim cause my vision is so poor. She did acknowledge my Restrictive Breathing disorder because I gave her copies of 2 tests a year apart. One says I need oxygen at home. Thank you for being here. Sculptor 44
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02-22-2022, 10:52 PM
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I talked to my pain clinic nurse today. I realized my neurologist basically took their record from a few months ago and used it to make me look an Arthritic old woman in pain. Not someone with Myasthenia. She made up stuff about pain I was in including a frozen shoulder I did physical therapy to avoid. It was from me using a hair blow dryer when I was losing muscle strength 15 years ago or more. U of I really likes to blame and manufacture mental health reasons. As if someone with a mental health issue can’t have Myasthenia. My pain clinic wants any newer MRIs and CT scans from Mayo. They did a lot in 2017. I requested my new Mestinon prescription today. Oh how I pray that neurologist does it. Sculptor 44
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| "Thanks for this!" says: | Atticus (03-09-2022) |
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02-25-2022, 12:02 PM
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Just got news my neurologist IS preparing to take away my Mestinon!!! I suspected this was where she was at because the anger off her this last visit was obvious tho she is such a subdued person. She gave my pharmacy 3 refill. She is furious I have gotten Solumedrol at ER in my City. I stopped going to ER at University where she is because they wouldn’t help me in recent years. At times I was mocked and once a resident saw me quit breathing durin his exam so he wanted to put me in ICU. His supervisor said no. I am worried about what my daughter is going to do with this. I left neurologist a message if I could send her my respected eye clinic records on myasthenia and the Voice testing in 2017 that stated it was MS or MG. I never got a call back. Sculptor44
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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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