NeuroTalk Support Groups - Home from Mayo

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- Myasthenia Gravis (https://www.neurotalk.org/myasthenia-gravis/)

- - Home from Mayo (https://www.neurotalk.org/myasthenia-gravis/256726-home-mayo.html)

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

just read old post baba about Mayo. Jomar answered. I got a sinking feeling in last few minutes. I think the interaction with the first pulmo doctor going sour cause of at least communication may have affected my great pain doc. I hope this isn’t the case. I read the short initial note but not the final long one. He seemed ti hurry finishing the note so neurology could get me in. I am frustrated that I was too sick and deep in survival to to do any additional notes or organizing as Jomar suggested with other person. My GP office chose not to use the info from my health advocate who is honestly a genius and is really scared for me. But she is by education a masters in Social work so when I asked the nurse at the doctors office and had said talk to her please she blew it off . They only let the office social worker talk to her. That social worker questioned her about the blasted CPAP issue. I swear these folks all own stock in CPAPS! I beg help me breath during the day time and they don’t want to hear it. I say please help me go for a walk! One nurse trotted out a 3 year old 6 minute walk test saying it was decent and let it go. I was on Mestinon for that test. The steroids I get in my facial nerves today usually help me see better and talk better.. I Need that badly to fix this as best I can. The docs I was set up with in neurology seem quite good. Even said muscle guy is kind. Boy I need and deserve kind. . Sculptor44