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Myasthenia Gravis For support and discussions on Myasthenia Gravis, Congenital Myasthenic Syndromes and LEMS. |
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Alice MD, Can you refer me to a document that says this about O2 that medical people would read and listen to? I know this but even as recently I was at a low for me when the nurse took it of 95% tho I hadnt been talking which makes me alot worse and I noted it to my daughter. The nurse smirked at me and said oh thats not bad I get people with 85%. This was at my internists at the biggest teaching hospital in Iowa. They know me. They know I am diagnosed with a neuromuscular disease and I have a very worried lung doc there for the restrictive breathing part of this.
Today I am breathing very poorly so no talking today. I want to go see my lung guy and not wait till I go for the new neuro November 2. This is scaring my daughter cause she saw how ignorant the local docs in my city, not the university city, are about this kind of breathing issue. An ER doc last year put me thru an xray just to say he didnt see the paralysis in my diaphragm I had indicated to him was found at Mayo. I said you cant do a standard xray for that. (Mayo did what is called a "sniff' test which is a special xray which shows the diaphragm moving correctly or not.) This is not what the ER doc did. But after the xray he shamed me and said why do you keep coming back..... When my voice began to fail from weakness he jumped on me and said now what is that about.....you were talking fine. I will never go back to that hospital. In the ambulance I had to repeat restrictive breathing disorder more than once tho barely breathing while they said "what?" Annie59 Quote:
Last edited by Annie59; 09-27-2010 at 11:06 AM. |
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#2 | |||
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Alice MD, Can you refer me to a document that says this about O2 that medical people would read and listen to?
unfortunately, I can't do that, not because there isn't such literature, but because I don't know how you can force medical people that choose to be ignorant, to read or listen to anything. like I said, if you have physicians you can trust, stick with them, and avoid those that still live in a flat world. Make sure that the physician you trust and is fully aware of your condition, gives you a letter that clearly states what needs to be done, and what parameters need to be followed if and when you come to the ER. If your condition was clearly diagnosed in Mayo and you have full documentation of this, just take it with you, and tell the physicians in the ER, that you have a rare illness that could only be diagnosed using special tests that are only available in Mayo. |
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I'm posting this entire article because you have to JOIN Medscape to view it -- NOT a big deal -- it is free -- but, I know that some of the group members had rather not. If you want to see the pictures/diagrams, you will have to join. Annie, I don't know if this is what you want/need -- but, I keep a copy in my purse......just in case!!!
http://www.medscape.com/viewarticle/439041 Quote:
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~jana Last edited by Chemar; 09-27-2010 at 02:45 PM. Reason: copyright at Medscape |
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Hi Jana
had to edit that some because there is copyright attached to that so members will have to log in to Medscape to read the full article. It is FREE and easy ![]()
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~Chemar~ * . * . These forums are for mutual support and information sharing only. The forums are not a substitute for medical advice, diagnosis or treatment provided by a qualified health care provider. Always consult your doctor before trying anything you read here. |
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Thanks, Chemar.
![]() Medscape is a fantastic resource -- it really IS worth the small effort to join!
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~jana |
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#6 | ||
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Jana, Yes I went and signed up and will read it over the next few days as vision allows. I will have it printed out to take with. Thanks so much.
Annie59 ![]() |
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