Need new plan

Sculptor44 · 06-06-2021, 11:02 AM

Good news is I leave for ER soon. My daughter needed time to rest and process all that happened with Mayo vist. So did I. I called the Lung Association and talked to a nurse which I hadn’t done in a while. Talk was very good and it helped me feel supported when she became disturbed given my current status that supplemental oxygen was indicated early last year and I never got it. Can talk here more after Steroids I will likely get. I think my GP who is newer may help get oxygen issues going again. Sculptor44

Sculptor44 · 06-13-2021, 05:53 PM

been an extremely hard week. It takes longer for steroids to help enough. I need to say I have had some excellent doctors like Ortho who finally gave my face pain a diagnosis so I could get treatment. But no I am desperately in need of a really great pulmonologist and the one at Mayo was not appropriate. A scheduler picked him out. He has no interest or background in muscle disorders like my last Pulmonologist at Mayo. It was all very unlike my previous experiences. I find out now he didn’t have information and or didn’t get it. I talked to his secretary and got him more information tho I don’t have much regard for him. He was a bully and implied I was wasting his time. My daughter has never seen such black and white proof as the X-rays he showed us. Where I live they do so much blaming the patient with Myasthenia it is too easy to dismiss for some. My cardiologist is one of the best. She like the 5th one in last 20 years. She immediately said your heart is fine you have severe Myasthenia Gravis who is treating you! Then she advised get back to Mayo Clinic. She was my first female cardiologist. I am crashing so gotta go. Sculptor44

Sculptor44 · 06-14-2021, 07:39 AM

About a plan. Someone here suggested I get a medical advocate.. I would very very much appreciate suggestions on where to find such a person. And please consider an option that is not lyonnaise be harder because my vision is so worse and my ability to talk for very long is very limited. Then there is the thinking part. Good grief I am a bigger mess than I was even 8 months ago. My daughter stated angrily no trips back to Mayo Clinic. Yet she says I must get EMG test on muscles ASAP. Now I can’t see the Mayo statement as a done deal or I would be so hopeless I would worry. My caseworker for my elderly voucher was some protection. She helped get me to Mayo more than this time. But she has retired as of this month. I sure appreciate any suggestions. Sculptor44

Lara · 06-14-2021, 10:20 PM

Hello Sculptor,

I suggested finding an advocate in one of the threads. I live in Australia, so am not familiar with your system there, however, I have just been searching for information specifically related to MG and found a little information.

US State MG support groups.
Myasthenia Gravis Foundation of America > MGFA Support Groups

Patient Advocate
A national 501 (c)(3) non-profit charity.
Home - Patient Advocate Foundation

Case management services
Case Management Services & MedCareLines - Patient Advocate Foundation

Contact number
Contact - Patient Advocate Foundation
(they're in VA)

Johns Hopkins - The Power of a Health Care Advocate
The Power of a Health Care Advocate | Johns Hopkins Medicine
It talks about paid advocates. Usually professionals i.e. nurses, social workers, or others who help a patient deal with the health care system, dealing with doctors and insurance etc..

Hopefully someone from the USA may have more info. too.

Take care there

Sculptor44 · 06-15-2021, 01:35 PM

Thank you so very much Lara. I live in Iowa and some of the issues are years of underfunding anything healthcare related. I am grateful for good caring folks I have had. My Iowa City Neurologist continues to prescribe my Mestinon and that is no small thing! Even she said time to go back to Mayo Clinic. My daughter is fighting that tho it is was a rocky start that is still the best place. I admit to having a unique case in that my breathing has been a major symptom more than usual for Myasthenia Gravis. I tell docs I end up in a ditch between pulmonology and neurology. Sculptor44

Sculptor44 · 06-27-2021, 06:09 PM

I see my new GP Tuesday for the longer history appointment. The appointment is now also to try to fix what happened or didn’t happen at Mayo. Also need to ask for steroids which pulmos now agree on. I need shots not pills cause body can’t tolerate pills more than I take. I only take 2. I am chemically sensitive. It showed up first with Zithromax many years ago. I had a GP who would give me shots about every 3 months in 2015.. my history of steroids is small and spotty. Some docs talk about it like it was the opposite. Even my nerve blocks for my occipital nerve pain were a special low dose steroid cause they knew I had MG. I have to gather the strength to tell my daughter I need to do part of Tuesday appointment on my own. Something about the current circumstances is triggering something in her. Not going back to Mayo is totally the wrong move. She has always been uncomfortable with going to Mayo. I did most of it on my own till last couple times. Sculptor44

Lara · 06-29-2021, 12:16 AM

Let us know how you get on with the GP.

If you need to go to Mayo again, perhaps phone a friend or confidante.

Sculptor44 · 06-29-2021, 05:14 PM

Hi. Today thank Heaven for my daughter!!! She always evolves from her angry places. I had her there at doctors office and she fought like crazy to just get 2 basic pieces of help. Nope it wasn’t happening. She negotiates daily as a project manager but this woman was vacant. I saw it in her eyes. Near end I said looking straight into her eyes “yes I see it in your eyes you aren’t with me in this.” My daughter said I give her a minus 40 on the compassion scale. . It was weird. It sure wasn’t anywhere in my reality. I asked her if she wanted me to do something different at Mayo. She never answered. She was more concerned with completely changing my pain treatment than helping me breath. I won’t see her again. My daughter is stunned. Sculptor44

Lara · 06-29-2021, 07:02 PM

Gosh, that's more terrible news though about yet another doctor.

What an awful waste of time and effort to go though this again. I'm very pleased your daughter was there with you to witness this.

Sculptor44 · 06-29-2021, 07:55 PM

Today would have been the day to have pulse ox of 88%. This of course was decent at 97% in her office cause of Mestinon and lots of coffee. My main concern when at a visit like this is timing Mestinon well and adding coffee to help legs work hopefully well enough to not fall. She even tried to suggest Solumedrol was not used in Myasthenia. And when I said Mayo pulmo supported steroids she said she didn’t read it that way. Perhaps this very poor doctor causing my daughter to have to fight on my behalf so completely was a harsh reminder for her of needing a much better option. I actually did very good prep in writing as this was supposed to be about my history. I remembered I am due for an MRI to check on my brain lesions. This doctor was so extraordinaryily unaffected by anything I said. It was a bit frightening. Pathological. She did mumble at one point about getting other docs leftovers. Sculptor44

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