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

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Old 06-24-2021, 10:33 PM #1
Atticus Atticus is offline
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Originally Posted by Sculptor44 View Post
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
Hey Sculptor,

Great to hear of some progress and of "a wonderful chat"

Best wishes,

Atty
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Old 07-08-2021, 12:56 AM #2
Acrobat Acrobat is offline
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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
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"Thanks for this!" says:
Atticus (07-08-2021)
Old 07-08-2021, 09:28 PM #3
Sculptor44 Sculptor44 is offline
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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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Atticus (07-08-2021)
Old 07-27-2021, 10:43 PM #4
Acrobat Acrobat is offline
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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?
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Old 07-29-2021, 12:19 PM #5
Sculptor44 Sculptor44 is offline
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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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Old 07-30-2021, 11:59 PM #6
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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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