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Member
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Join Date: Oct 2020
Posts: 180
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Member
Join Date: Oct 2020
Posts: 180
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Home from Mayo
Saw my pain clinic today and received my wondrous mini steroid injections on face and head. Some relief so will try to do update here. The worrisome thing here is no one but me gets how sick I am due to the even worse downplay of my symptoms by docs here locally in last year. I am not believed. Not quite 2 years ago I went to my then GP and appealed to something was very wrong. 5 days later I could not rise from a chair and got to ER And only admitted to hospital when they found my sodium levels critical. 5 days later With sodium better I was discharged to a facility not home cause I still could not stand. Now I know if they would have done a full neuro work up and done steroids I could have gone home. The hospital was University of Iowa. I am clear they would let me die rather than give me any type of comfort and certainly not even 125 units Solumedrol. But 50% of the reAson for that is the last neurologist I saw at Mayo and yes she even told me to quit my Mestinon. I turned and glared at her and said if I quit Mestinon I will be in a bed in a nursing home. She said oh and said well you can take 3 a day. I told Mayo I will not see her again. There are a few reasons why I have doctor trouble. My cardiologist says there just isn’t good enough docs locally for Myasthenia. But also one.neuro who mainly does MS and has never physically examined me has gone out of his way to minimize my disability. The new pulmo I saw has problems but I can go back to the really good person in Patient Assistance for some help. Also tho I need a doctor to support me here to develope a plan on how to manage being seen with my body this sick. I really am concerned about my brain changes. There is this ‘jumble’ now that has been worse for a week with my brain. I can function but it is awful. My eyes are fading. Can share more later. Found an old comment by Annie on a Mayo trip post. She said something similar to don’t stop your Mestinon. It is important not to see these doctors as gods. We all are experts about our bodies. We live in them!! Sculptor44
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