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| Myasthenia Gravis For support and discussions on Myasthenia Gravis, Congenital Myasthenic Syndromes and LEMS. |
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05-30-2021, 10:46 AM
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So my messed up Myasthenic eyes finally let me get notes read from recent Mayo trip. WOW! It is worse than I expected. My daughter has not wanted to go to Mayo and I said it will be different. But I thought I would see Dr Mark Wylam my original pulmo. So my daughter texted me and has talked to my neurologist locally to get help with treatment and she has ordered an EMG. Firstly I have no trust anymore putting myself in their hands. Secondly I fear the position this puts me in with my daughter. Going back to Mayo is not an option. I looked up the other docs in neurology they set me up with and it looks much better. This pulmonologist said he didn’t have recent tests since 2016. He should have. He barely talked to me as far as a real intake would expect. When I tried to bring up the chest pain and discomfort he swiftly shut me down and chalked it up to nerve pain issues which he blamed any of my pain on which is way off base. I think I have pleurisy. Maybe more. There is something new in my chest and I never got to discuss it. He was very dismissive and seemed to already have prejudged based the Unity medical doctor system back here. A person doesn’t drive all that way for that! Will do more on this later. Sculptor44
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| "Thanks for this!" says: | Atticus (05-31-2021) |
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05-30-2021, 11:23 AM
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Opps I miss spoke I think. I meant I have to go back to Mayo for treatment and a plan cause seriously back in Iowa the well is poisoned. On the whole Mayo Clinic hasn’t been a snap judgement place. Or do they overly rely on previous docs. I maybe can talk 30 to 45 min total in a day without damage. It is like fighting blindfolded when I can’t talk enough or do follow ups . And then my daughter. In her fear after the appointment she turned into a raging 5 year old the next morn even tho I tried begging for supportive words. My girls have been in denial for years. Seeing those X-rays with my lungs small and distorted was jarring for both of us. For the re ord I had a positive tension test in 2010 locally. It gets ignored. This new Mayo guy didn’t ask me much of anything but the question about my last Mayo pulmo summary. It was truly weird. And I ended up in excruciating pain in my lower legs that is not nerve pain as he suggested. Here’s a thought. Ask me about it!!! Sculptor44
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| "Thanks for this!" says: | Atticus (05-31-2021) |
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05-30-2021, 01:34 PM
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It is worse than I thought. My daughter is furious and is full of ultimatums. She wants to direct my medical totally. And she wants me out of my apartment and into a facility. Because of the horrible state of healthcare and Medicaid in Iowa my choices are extremely poor. She is not making sense she is terrified that I could stop breathing and or walking if I stay in my apartment. She chooses to believe the idiot at Mayo who after the scary X-rays showing one 12:months ago and one now. How it is degrading faster...... he mainly parroted what they have said back home. None of which was done off Mestinon. To be honest I do pray sometimes to be let go from my failing body. I am scared. Sculptor44
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| "Thanks for this!" says: | Atticus (05-31-2021) |
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05-31-2021, 05:04 PM
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Legendary
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 It sounds an extremely difficult time for you. It's sad that you're so scared all the time.It also sounds as if your daughter is very frightened as well and worried for you. That's maybe why she's acting out and angry with you so much. It could just be her own fear for your health and safety that making her act that way. Is there someone in your extended family or amongst your friends or associates who could perhaps act as a mediator between your daughter/s and yourself and your regular doctor so that the emotional aspect can be left out of such important life decisions? Last edited by Lara; 05-31-2021 at 05:56 PM. |
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| "Thanks for this!" says: | Atticus (05-31-2021) |
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05-31-2021, 05:56 PM
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Legendary
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I just read an older post of yours from January where you wrote that you had lost Home Care and needed a Health Advocate.
I'm wondering if you were able to get Home Care back and if not why not? Maybe time to revisit the idea of having a Health Advocate as well. I am sure that where I live you would most certainly be eligible for home care, but we have a totally different system. I'm also wondering if you have difficulty reading the Text in the posts because of eyesight problems. I've put this one in larger txt just in case. |
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| "Thanks for this!" says: | Atticus (05-31-2021) |
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06-01-2021, 06:50 PM
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On text size anything larger helps yes thank you. When I do bold that helps cause it is less blurry. Homecare is not good which increases strain on my daughter greatly. I have a new person who my daughter gives cash to case Amerigroup version of cost control is layers of delay. I called my State Omnbudsman last week and said to go after them. Expenses are off the charts right now and this is part. And it is just one very nice young lady who comes for 60 to 90m 3 times a week. I need more. I started barely to get a health advocate before I became sicker. Literally I didn’t even talk yesterday and my chest was worse today tho My oxygen has been down for 3 days. I lost my homecare agency which is common here for people who have more complex health. I actually have test results that show I improve with Solumedrol. It did not seem like Mayo doc saw that. He did list hypoxemia in notes but he didn’t give the opportunity to talk hardly at all. I am in a similar place I was in months before I went into hospital. But it hasn’t been months. I am becoming too compromised to eat and drink enough. I had a lovely fried chicken breast from store that sat in frig for 2 days cause getting at the meat was too much for my hands and arms. I called my neuro nurse today and left her a message about hitting 87% oxygen and just doing not well. My daughter had talked to the nurse a few days ago. They won’t move on helping me unless I pass an EMG. They don’t do good EMGs. Mayo is my best hope if that’s the necessity. It is difficult to not be scared right now. Today is unusually rough. I did get couple bites chicken. Sculptor44
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| "Thanks for this!" says: | Lara (06-03-2021) |
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