NeuroTalk Support Groups - Medical desert I live in

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Medical desert I live in

I get pieces of clarity after solumedrol shots for various reasons. Not the least of which is less of a fight to breath. I live in a larger city in eastern Iowa yet have no idea how to get the necessary help I need. This problem has been flipping over and over in my brain since last nite. Now if this was cardiac or obviously cancer I would have options. I get flashes of memory about the local neuro who screamed at me not once but at 2 different times in the hospital. The 2nd time he pushed to totally take me off Mestinon and get oriented to CPAP their persistent idea to make me better. If I go into the local hospital I will get that group of neuros. If I go into the University of Iowa hospital I may not get screamed at but I will get a grab bag of docs who mostly assume wrong and drown out the best ones. Last times the found a sodium crisis tho I came in unable to stand and treated only he sodium. They put me in a skilled nursing facility under the wrong diagnosis and let my kids believe that would be my life from then on. I sure got a great doc and nurse at ER last week. It was easy to be totally frank with them that I was doing all the right things like informing docs and such but not getting back the help I need. Sculptor44

Have a pulmonologist visit in city where I live. I have not seen him since the Mayo Clinic pulmonologist visit in May. I don’t know what it will be like. He is a good guy but because My care has become so poorly documented my treatment and visits are not very useful. But at least this is the guy who allows me to ask for Solumedrol at the ER and that has me in a safer place. He wants to do a 6 minute walk test and maybe give me oxygen. I don’t know how to explain that I could not get to the Mayo Clinic neurologist yet. I have been assigned another nurse. Got the call late Friday. I asked who ordered it. While she had difficulty understanding the order eventually she listed 2 doctors I never heard of.. I tried too more info and say I couldn’t bo it Monday as I have the pulmonologist to prepare for Wednesday. She fought back on that and insisted it wouldn’t be hard all I would have to do is talk! Me screaming here at that suggestion after the pure Hell I went thru Friday nite because I had to meet and talk to a new homecare person. I barely talk anymore. I am still recovering from Friday. I lose my voice and my sick diaphragm is more stiff and painful than usual. Sculptor 44

Pulmo appointment was worse than I hoped for perhaps not than I expected. I think I can be too understanding at times. Had a Pastor who said I had the patience of a Saint. There is a local neuro who is not a muscle neuro tho did find my brain lesions. But he also made it his business say I wasn’t as bad physically as I said I was. This guy never did a full neuro exam on me. Also he tried to do a lumbar puncture on me in his office tho weren’t near a hospital in event of a problem. Mayo had tried to do one and the first doc backed out when he realized my breathing can’t tolerate lidocaine. Other staff tried to do it there at Mayo when I said it was ok to do no pain meds as I have so much loss of feeling. They tried for an hour and couldn’t get thru. I stopped the local neuro and said at the office wasn’t gonna work. He was very angry. But angry or not knowing he had a watered down vision of my symptoms I couldn’t trust him . I confirmed he was doing this thru an MD I did cognitive testing with. I was straight with her and said I think he is misleading doctors. She said yes he is gaslighting you. I had a pretty darn good family doc for 20 years. He acknowledged my MG. He retired about 7 years ago and I have bounced around since then. The gaslighting cost me one of the better ones. At least it seems my daughter realizes we need the neurologist at Mayo Clinic. Sculptor 44

Actually some fear is setting in. I thought this guy would give me oxygen. And he even did a push back on me saying the improvement in my overnite oxygen tests about a year apart showed the regular solumedrol was helping. Depending on how he documents that that could mess with my solumedrol shots at ER. He had no intentions of helping me. He restated pulmonologists aren’t supposed to help you neurologist s are. People I mostly always had at Mayo were never like this at all. Except for the last doc I saw at Mayo they were always so very supportive caring. Today wasn’t even set up for success for someone with Myasthenia. It is so hard to talk yet I spent time trying to get this guy to listen It is hurtful. Sculptor 44.