Myasthenia Gravis For support and discussions on Myasthenia Gravis, Congenital Myasthenic Syndromes and LEMS.


advertisement
Reply
 
Thread Tools Display Modes
Old 05-30-2021, 10:46 AM #1
Sculptor44 Sculptor44 is offline
Junior Member
 
Join Date: Oct 2020
Posts: 40
Sculptor44 Sculptor44 is offline
Junior Member
 
Join Date: Oct 2020
Posts: 40
Default Revelation. Pulmonologist Wrong!

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 didnít 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 doesnít drive all that way for that! Will do more on this later. Sculptor44
Sculptor44 is offline   Reply With QuoteReply With Quote
"Thanks for this!" says:
Atticus (05-31-2021)

advertisement
Old 05-30-2021, 11:23 AM #2
Sculptor44 Sculptor44 is offline
Junior Member
 
Join Date: Oct 2020
Posts: 40
Sculptor44 Sculptor44 is offline
Junior Member
 
Join Date: Oct 2020
Posts: 40
Default

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 hasnít 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 canít 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 didnít 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. Hereís a thought. Ask me about it!!! Sculptor44
Sculptor44 is offline   Reply With QuoteReply With Quote
"Thanks for this!" says:
Atticus (05-31-2021)
Old 05-30-2021, 01:34 PM #3
Sculptor44 Sculptor44 is offline
Junior Member
 
Join Date: Oct 2020
Posts: 40
Sculptor44 Sculptor44 is offline
Junior Member
 
Join Date: Oct 2020
Posts: 40
Default

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
Sculptor44 is offline   Reply With QuoteReply With Quote
"Thanks for this!" says:
Atticus (05-31-2021)
Old 05-31-2021, 05:04 PM #4
Lara's Avatar
Lara Lara is offline
Legendary
 
Join Date: Sep 2006
Location: Tropics of Australia
Posts: 10,457
10 yr Member
Lara Lara is offline
Legendary
Lara's Avatar
 
Join Date: Sep 2006
Location: Tropics of Australia
Posts: 10,457
10 yr Member
Default

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.
Lara is offline   Reply With QuoteReply With Quote
"Thanks for this!" says:
Atticus (05-31-2021)
Old 05-31-2021, 05:56 PM #5
Lara's Avatar
Lara Lara is offline
Legendary
 
Join Date: Sep 2006
Location: Tropics of Australia
Posts: 10,457
10 yr Member
Lara Lara is offline
Legendary
Lara's Avatar
 
Join Date: Sep 2006
Location: Tropics of Australia
Posts: 10,457
10 yr Member
Default

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.
Lara is offline   Reply With QuoteReply With Quote
"Thanks for this!" says:
Atticus (05-31-2021)
Old 06-01-2021, 06:50 PM #6
Sculptor44 Sculptor44 is offline
Junior Member
 
Join Date: Oct 2020
Posts: 40
Sculptor44 Sculptor44 is offline
Junior Member
 
Join Date: Oct 2020
Posts: 40
Default

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 didnít 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 didnít 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 hasnít 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 wonít move on helping me unless I pass an EMG. They donít do good EMGs. Mayo is my best hope if thatís the necessity. It is difficult to not be scared right now. Today is unusually rough. I did get couple bites chicken. Sculptor44
Sculptor44 is offline   Reply With QuoteReply With Quote
"Thanks for this!" says:
Lara (06-03-2021)
Old 06-02-2021, 07:17 AM #7
Sculptor44 Sculptor44 is offline
Junior Member
 
Join Date: Oct 2020
Posts: 40
Sculptor44 Sculptor44 is offline
Junior Member
 
Join Date: Oct 2020
Posts: 40
Default

so my daughter blew up at me. It is safer to blow up at someone you love than say at work. Last time she had giant blow up at a nurse in January it actually resulted in the doctor signing me up for a special extra waiver. Now we just discovered this recently because no one ever told us and I am unclear that it does much but bend some rules so I could easier get into a skilled nursing facility. It sounds like she had some lesser blow up with my neuro nurse recently. What I am clear on is that I am not going to get support for treatment from The University Of Iowa Neurology. There is a neuro there named Buchanan who with no exam threw out the complete exam by a good resident in the span of 5 minutes and his recommendation I be admitted to ICU. He accused me of just seeking steroids and stormed out of ER room. I ended up in hospital because my Iowa City internist had sent me to that ER in a wheelchair directly from her appointment with me. My color was even bad that morning. I fully believe short of me being shot or diagnosed with cancer Iowa City will not help lift us from this place. My daughter and I are both drowning. I am gonna need to call and talk to the office social worker for my newer GP to hopefully square some misperceptions before my next appointment with GP Monday. Also establish key points. This social worker had chance to get a great overview on my health from my caseworker before she retired. Yet in last check in with my caseworker she said office social workers biggest question was why I wonít gleefully agree to CPAP. AAARRRRGGHH!! Sculptor44
Sculptor44 is offline   Reply With QuoteReply With Quote
"Thanks for this!" says:
Lara (06-03-2021)
Old 06-03-2021, 05:29 PM #8
Lara's Avatar
Lara Lara is offline
Legendary
 
Join Date: Sep 2006
Location: Tropics of Australia
Posts: 10,457
10 yr Member
Lara Lara is offline
Legendary
Lara's Avatar
 
Join Date: Sep 2006
Location: Tropics of Australia
Posts: 10,457
10 yr Member
Default

I was thinking about your situation as you've posted here and I have to say that one of the most difficult things I've ever had to face in my life due to serious illness has been a certain loss of independence. Edited my post later to say... it's more about no longer being in control.

I don't know why exactly, but no one else seems to talk about it... not family, not doctors, not nurses.

Having been fiercely independent and strong all our lives and suddenly ending up so ill with other people telling us what to do and what not to do and never seeming to end up moving forward. It's a challenge indeed and it's very frustrating.

I don't have MG but I have something else but fortunately I am able to still do physical work. There have been times during the past couple of years that I could not, but I am so grateful that I can still tend my very large property and cook etc..

I worry that you're not eating properly and hope that someone can sort out easier meals for you to consume. They don't have to be large, but they need to be nutrient dense. Can you drink smoothies for example?

Anyway, just popped in to see how you were doing. I'm sorry it's so difficult for you.

Last edited by Lara; 06-03-2021 at 07:22 PM.
Lara is offline   Reply With QuoteReply With Quote
Old 06-07-2021, 07:23 PM #9
Sculptor44 Sculptor44 is offline
Junior Member
 
Join Date: Oct 2020
Posts: 40
Sculptor44 Sculptor44 is offline
Junior Member
 
Join Date: Oct 2020
Posts: 40
Default

Oh yes I keep thinking about autonomy. I had an extremely bad situation when I was released too soon from hospital and sent to nursing recover place. I became furious when my daughters went into conflict because staff was not being truthful. Me momma bear talked to my PT and I said you gotta get me walking so I can leave! I went into problem solving mode and pushed. I got direct with social worker and said NO MORE restrictions on fluids! When nurse found out she came in and wasnít happy thatís when I discovered I was in under wrong diagnosis. This was after 2 weeks there. I was injured badly in there because of this misunderstanding of my body. It happened during a shower. There was a sunny court yard outside my window and tho my Vitamin D issue and finally appealing to doctor I never got out there. That was one of the worst . They said family could come and take me they were too busy. I miss work terribly. But mainly I just so want to hang out with my grandkids and talk and listen. Sculptor44
Sculptor44 is offline   Reply With QuoteReply With Quote
"Thanks for this!" says:
Lara (06-07-2021)
Reply

Tags
chest, daughter, mayo, pain, talked

Thread Tools
Display Modes

Posting Rules
You may not post new threads
You may not post replies
You may not post attachments
You may not edit your posts

BB code is On
Smilies are On
[IMG] code is On
HTML code is Off


Similar Threads
Thread Thread Starter Forum Replies Last Post
Revelation of the day DFayesMom Traumatic Brain Injury and Post Concussion Syndrome 3 05-19-2013 08:59 PM
Pulmonologist visit southblues Myasthenia Gravis 6 05-11-2013 10:55 AM
More new docs.....pulmonologist firegirl Reflex Sympathetic Dystrophy (RSD and CRPS) 2 10-08-2010 06:16 PM
A Revelation BJ Sanctuary for Spiritual Support 10 02-25-2008 09:21 PM
~revelation~ i take it all back! awesomeskier5 Trigeminal Neuralgia 11 03-01-2007 08:14 PM


All times are GMT -5. The time now is 08:08 AM.

Powered by vBulletin • Copyright ©2000 - 2021, Jelsoft Enterprises Ltd.

vBulletin Optimisation provided by vB Optimise v2.7.1 (Lite) - vBulletin Mods & Addons Copyright © 2021 DragonByte Technologies Ltd.
 

NeuroTalk Forums

Helping support those with neurological and related conditions.

 

The material on this site is for informational purposes only,
and is not a substitute for medical advice, diagnosis or treatment
provided by a qualified health care provider.


Always consult your doctor before trying anything you read here.