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TALKED to local neurologist
[B]Yesterday my Iowa City neurologist of many years called in response to my message Friday about being worse. I can’t relate all my feelings and on thoughts I am overwhelmed with the brief content. I find I am puzzled and disappointed with her tho from experience I am pretty realistic about her. I just so so very badly need more of her now. I agreed to see her. But her idea and justification for wanting to to do an EMG with me still on Mestinon was surprising and thought provoking. I called back and said I could not do a visit and an EMG on same day and without her getting updated on my status. I didn’t learn how a good EMG is done until I was at Mayo Clinic in 2008. The muscle neuro area didn’t even exist here then. In all honesty it feels like a dangerous joke to just focus on an EMG with my oxygen levels down and declining and other issues worsening. Sculptor44/B]
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my oxygen was down to 88% this morn. I need a solumedrol shot to at least breath better. But I am still in this limbo of a minor war on whether or not I get to have steroids And most importantly someone saying yes I will give it to you. So last August in a desperate place I went to local ER and said this is what I need at end of the usual song and dance. I so so hoped Mayo Clinic would clarify the need. He mentioned it in notes but not as order. This young resident who they ordered to read my whole file when I was in hospital with a sodium crisi in part. He asked me why he didn’t see big steroid use since they were so determined I not get them. The truth being I had not been getting regular or a lot of steroids as had been the story on why to not let me have them. Sorry to go on. I just truly need someone caring enough to listen to my truth and help me breath!!!! Please. Please. Sculptor44
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I'm certain we're not ignoring you, just are tied about what we can do. Would a trip to the ER help at this point.
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Hi Sculptir44.
I'm sorry to hear about your challenging condition. I have experienced personal complicated physical conditions. I saw the best doctors in the US and even travelled to Canada. After little help from trad Dr s I began holistic healing methods and I began to heal. I have since dedicated time to learning and sharing helpful ideas and methods that could benefit everyone. Have the doctors provided a diagnosis? Is the breathing and extremely low oxygen levels your only symptoms? Have you looked into any holistic methodologies? |
Hey Sculptor,
I read all your posts. I am listening. I offer my sympathy. I think people don't write responses because its difficult to know what to say. People want to help, but its difficult to know where to even start. I get it that sometimes that someone just wants to be heard. People read your posts, look at the numbers. You are being heard. I hope you can find the outcomes you're looking for, Best wishes, Atty |
Hi I am sorry that my post was not clearer. I am struggling with my worse vision from Myasthenia and my brain which could use some oxygen. My call out was to doctors and nurses and even our worn country to see me and treat me. I feel heard here. I did get a piece of hope today when I reached out to a Midwestern MGA office. It was a kind wonderful chat. And she gave me a resource for some breathing tech. I think it gave me a piece of strength to get my local pulmo nurse called for an update. It went way better than previous calls. I started a fresh bottle of Mestinon today. I am breathing some better. And I discussed my needing steroids again with nurse and she said my GP should be willing to do it when I see her Tuesday. She referred to her in a familiar way. She said go to ER if I need to before that. Sculptor44
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Quote:
Great to hear of some progress and of "a wonderful chat" Best wishes, Atty |
Hi Sculptor44.
So happy to hear that you had some positive experiences! Breathing techniques and simple meditation exercises can be a game changer. I found the below link that you might find helpful. Meditative Breathing for Those with Myasthenia Gravis - YouTube |
so grateful acrobat for the meditations to explore. I had one on tape once by a counselor that painted a wonderful image of a fireside gathering. I am slowly improving at home from an ER visit Monday. I sure had the great fortune of getting a really good doctor!, She and her kind nurse took great care. She also warned that I may need to return and to not hesitate. She gave me Solumedrol I made calls this week to return to my former doctor and had ER send notes to her. Sculptor44.
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Hi Sculptor44!
You are very welcome! I hope the meditation therapy is beneficial 😊 In my previous note I shared my passion in helping with possible traditional therapies but also have dedicated time to compelling holistic approaches. Feel free to read my pcs threads and posts. How were the last couple of weeks for you? Also at what point in time or about when did the physical symptoms begin? |
Thank you for posts. One of the things I am really hoping for is a more solid diagnosis with treatment plan. I have more than myasthenia now . I saw a great holistic chiropractor who was an amazing person on healing touch and/or reading bodies. Not sure what I should call it. A homemaker I had told me her client who had ALS used the fella regularly. He also knew acupuncture tho I didn’t get that and he did a very skillful and gentle adjustment to my left jaw which is also where I have face pain. Occipital nerve pain. I only saw him once because he worked out of a sports clinic that didn’t take Medicare for the parts it could pay for. I could not afford him sadly. Got off of a point I meant to make. Getting treatment beyond Mestinon should help my vision. This is truly the worst so I don’t catch all that is said. I have 2 appointments in August at Mayo. I looked up the neuro and he seems pretty perfect for my situation AND his rating is 5/5. My symptoms likely were my eyes first. In my 30s. In 2008 I was put in hospital for possible myasthenic crisis after I collapsed in a very hot shower. Sculptor 44
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Thank you for sharing! And I'm happy you have 2 appts coming up in August w a neurologist that looks good.
And yes Holistic chiropractor and acupuncture therepy can be helpful for so many challenging conditions. Unfortunately I completely understand how costly treatments can be esp when not covered by insurance. Do you happen to recall what was happening in your life during the onset of your vision symptoms and your collapse in 2008? Could be any general memory at all (life changes/transition, something w family, friends, work, etc) Also Sculpture 44 is cool are you into art? |
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