On May 19 I will be seen in pulmonology there by a new doc. I had a great pulmonologist there who now only does transplants. I have been hurt so much by medical system losing a super respected doc who is very kind too is painful. Except for my neurologist there I was always treated very very well. I went to ER Monday and was honest saying help me keep going so I get to Mayo Clinic. I had fallen 2x Saturday because legs getting worse amongst other symptoms. She agreed to a solumedrol shot and read the new notes from my longtime advocate now in my medical record to high lite the reality not a bad docs musings. ER doc said she is glad I have this person. Said she is worried about me living alone. I just NEED to breath better!!!!! My oxygen level is regularly around and below 90% now. I will write more as my brain and eyes allow. Tho not urgent like breathing I am so frustrated with how worse my vision is in the last month. Sculptor44

Worked on getting final parts of medical records ready for Mayo. Ended up with 2 very frustrating calls but a final one to a patient advocate office at Mayo that was far more helpful. As an example I have documentation that says 4 different things about the muscle biopsy my pulmonologist finally strong armed neurology to do on me locally years ago. The best one is from the brilliant pathology doc who explained why it was abnormal and needed further reading with an electron microscope. But what gets seen the most is neurology saying he biopsy was just negative. So given this is just one example when the people today tried to get me to back off by saying Mayo has all the records I ignor them . I can hand carry my copies which earlier they said was fine. I talked too much. Oxygen down to 90% Sculptor44

Hi Sculptor44

I am glad that you have found good doctors at the Mayo Clinic.

I hope that they continue to work with you well.

Best wishes.

I leave Tuesday with my daughter. It is 3 hours away tho more to factor for unknowns and stop to eat and such. I think I have done well getting records sent and a packet to carry about my hospitalization 2 years ago that went so badly. I decided to send records from my pain clinic folks as they have seen me more regularly than anyone in last 2 years. Also they do good records on me. The lead do. Is also a geriatric doc so she is most compassionate besides being great with my pain. It is not helpful to spend time on things that are getting worse like my vision and my thinking. I sure hope the brain stuff is just my lower oxygen. I have places where my muscles are kinda evaporating. The largest area is on left leg just above ankle. An od spot is in top middle of my upper arm. Eating when I am away from home is a big challenge. We are staying same place as lasting. They have truly wonderful beds for this body. I go to Clinic Wednesday. If anyone can send me a good thought I appreciate it lots. Sculptor 44

All the best to you for your appointment and also for your trip.
Let us know how you get on when you get back.
take care,
Lara

Home few hours ago. He showed me X-rays from last year March and this year. My lungs are growing smaller and the last year has been a lot worse. He said my nonfunctional diaphragm is pushing up making them smaller. It frightened both me and my daughter. Now information is appreciated but then he kinda started a big confrontation that I still don’t understand. I finally said after several tries I would leave the room if he did not stop. He wanted me to tell him what final messages were given from my last Mayo Pulmo . I did not understand why really but tried to guess what he was after. None of my answers were suitable per him. He honestly seemed to try to make similar points the pulmo I tried once locally. This was after X-ray info. And then he ordered testing but said To stay on Mestinon. At that point it was a circus. I said my senior pulmo at Mayo wouldn’t do that. I realized I had to come home at least to recover. I was getting worse fast. After the X-ray. View he did mention ALS. I have to regroup. Honestly he liked my daughter more than me. My genius pulmo I had last 2 times at Mayo was always the key to things being sorted and moved forward in a very good way. Like the messed up biopsy thing I spoke of before. He good heartedly said oh I know what happened and he set about fixing it with neuro at Mayo. They did a new more thorough biopsy at my right hip. They learned a lot! I fought for my original pulmo but was told his his lung replacements are his only work now. Sculptor44

I have a new coping tool. When things seem darker I chose a bright spot , a good thing focus on. Today it’s the homemade cranberry sauce that came with my turkey dinner at hotel last nite. I rarely get to eat new much less hot meal. Sculptor 44

Sculptor 44, my heart goes out to you, I wish I had words, but no matter what we are going thru, we are on our own paths with what we are challenged with. I always thought 90% was good for oxygen. I do deep breathing on that issue for myself. I saw my neighbor last night, attempting to walk her little dogs and she has pretty advanced pulmonary issues, and it all got worse for her with the onset of RA about 5 yrs ago, prior to that a strong woman. She also mentions that she has post polio syndrome issues. Didn't plan to talk about her but I know her and hearing your story I chose to mention her. Do you meditate, silent meditation can do so much. Loving thoughts to you.

About 90% oxygen per my Pulseox unit my GP nurse said to report when it get down to that. My neuro got me an at home pulseox. Only recently are these lower numbers happening. My Mestinon for Myasthenia helps but can’t compensate for this much worse. Solumedrol really helps. The daily acupuncture I generally do helps. Since anxiety is not a problem for me meditation does not help my breathing issues. I have several types of mediation over the years including Tai Chi. The new pulmo said he wants to help improve my status. Tho rocky start I believe him. We just need some work getting on same page hopefully. Sculptor44.

Risky risky day! Had bad fall after not raising foot high enough coming out of building. Kind fella who was holding the door was like a football player soI grabbed for him and he caught me. When My body gets quite bad I say I am a ‘noodle’. Several appointments were scheduled at Mayo for this week. I have no idea how to do what they want with this body. Solumedrol can help but there are limits. Locally I have to try for more support. I have this brand new GP. Who referred me back to Mayo but I am new to her. I feel like my body is failing faster and I am scared tonight. I will hybernate tomorrow. I am glad I can. Sculptor44