 |
|
| Myasthenia Gravis For support and discussions on Myasthenia Gravis, Congenital Myasthenic Syndromes and LEMS. |
| Reply |
|
|
Thread Tools | Display Modes |
07-18-2021, 01:03 AM
|
#1 | ||
|
|||
|
Member
|
Being in a steeper decline and at my age I found it easy to deal in wicked truth in several medical phone calls the end of this week. I confronted my local neuro about her planned EMG on 29th. She gave me new info but not the yippee kind. More later on that. Also got more info from Mayo Clinic. I tried to connect with neurology.I wanted to do an initial telemedicine visit for an interview which the jerk of a pulmonologist actually did not do. I mean seriously why would my daughter and I spend all that human and financial capital to see someone who makes assumptions from old records and a few recent ones. More on this later. Sculptor 44
|
||
|
 Reply With Quote
|
| "Thanks for this!" says: | Atticus (07-18-2021) |
|
07-22-2021, 07:52 AM
|
#2 | ||
|
|||
|
Member
|
seeing new home visit nurse today. Given how I feel this morn I should cancel everything and stop talking for at least today maybe 2. Late yesterday I did the Wicked Truth thing again and set firm limits on the nurses visit or said we would need to reschedule. So also some odds and ends: I made an appointment with Mayo Clinic on Aug 13 for the EMG they want.. I haven’t told my daughter yet. Without the standard medical support here at home I am having difficulty getting the support I used to get from Mayo. Lastly I wanted to note under good things I found neurologist Nicholas Reish now practicing in Chicago area. He is the only neuro who has done a complete neurologist exam which should include arms in many years. After he did it he wanted me admitted to ICU. This was during his residency at University of Iowa Clinics. Of course his supervisor a bully who I filed a complaint on after said no and later my own neuro came to ER did the proverbial pat on the head saying are you feeling depressed....... Thenpoint is Dr Reish would be well worth a visit and I am sad he went to Illinois. Sculptor 44
|
||
|
|
Reply With Quote
|
|
07-22-2021, 06:39 PM
|
#3 | ||
|
|||
|
Member
|
well this is sure surprising. When the nurse stated her 3 top items one was to discover what in my home is contributing to me ending up at ER for treatment. When my daughter and I tried to discuss the responsibilities of my medical people and some concerns and goals it was work. A lot of work like saying what Mayo pulmo said after this nurse seemed to want to talk about my lung function in a less serious way. She had not read Mayo notes only the newer local pulmo I barely put up with cause he says steroids make sense and he may give me oxygen. I have to process this more but I can’t believe the unwillingness by her to believe there are medical things here that could be working better. Sculptor 44
|
||
|
|
Reply With Quote
|
|
08-08-2021, 06:32 PM
|
#4 | ||
|
|||
|
Member
|
I am deeply shaken. My daughter said she will not take me back to Mayo Clinic. I set up appointments with considering her. A short trip for EMG Friday this week and follow up next week with Neurology. The next 24 hours are going to be very hard. I do not know who she is any more. It is good I no longer have a car as by end of this past week I felt so out of control of my life I would have gotten in it and tried to go for a meal for a tan for a pair of shoes. Or just to for a brief period have agency over my life..My own life. Sculptor 44. y.
|
||
|
|
Reply With Quote
|
|
08-13-2021, 04:36 AM
|
#5 | ||
|
|||
|
Member
|
Hi. My daughters have pictures of me as this endlessly strong person that could probably go thru a brick wall if need be.. Each daughter handles me being so ill differently But similar in that tho really smart and capable they can’t see what their denial is doing to me. Their dad passing away at 42 in a hospital is sure an ever present piece of history and pain. Today I learned in preparing to see my pain clinic that they had received recommendations from Mayo Clinic after my visit. It turns out the lousy GP I had refer me to Mayo Clinic was primarily interested in my use of one hydrocodone a day that if I can breath and walk. Good grief. The medical person who actually tried to state a diagnosis without seeing me or talking to me wrote this note to my clinic. I without hesitation told the clinic to ignor the document as it has no basis in fact and use the record from my original diagnosing Orthopedic doc from University of Iowa. I see the pain clinic Tuesday. I sure am ready. My left face is in more pain than usual especially all thru and around left eye. Sculptor44l
|
||
|
|
Reply With Quote
|
| "Thanks for this!" says: | Lara (08-13-2021) |
| Reply |
| Thread Tools | |
| Display Modes | |
|
|
Similar Threads
|
||||
| Thread | Forum | |||
| Parkinson's patients not fighting alone - Wicked Local | Parkinson's News | |||
| Wicked Weather | Social Chat | |||
| Wicked Wednesday | Weight Loss & Healthy Living | |||
Wicked truth
Linear Mode
