And forward i go

Sculptor44 · 02-20-2022, 07:40 PM

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

Sculptor44 · 02-22-2022, 10:52 PM

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

Sculptor44 · 02-25-2022, 12:02 PM

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

Sculptor44 · 02-25-2022, 08:59 PM

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

Sculptor44 · 03-01-2022, 09:36 PM

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

Sculptor44 · 03-08-2022, 08:14 PM

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

Sculptor44 · 03-23-2022, 03:13 PM

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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