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Old 09-27-2010, 10:43 AM #1
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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


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Originally Posted by alice md View Post
Dear Annie,

I will be brief and straight to the point, and use as little sarcams as possible ( I wrote a previous post which was too sarcastic, so I deleted it, and wrote another one instead)-

I think you need a Bipap, to use during the night and possibly during the day, when you experience significant breathing difficulties, and if at all possible, you also need better treatment for your "well controled" MG.

day or night O2 sats, are not a good indicator for respiratory muscle weakness, or the need for respiratory support. they can be near normal even in the face of significant respiratory muscle weakness.
parameters that apply for the diagnosis of sleep apnea are quite irrelevant for diagnosing nocturnal hypoventilation due to neuromuscular disease.

clinical symptoms on the other hand are! and those include : early morning awakening with shortness of breath, day time sleepiness and fatiuge, morning headaches, irritability and difficulty in concentration etc.

portable oximeters (even the best in the market, like I have) are not very reliable, so I wouldn't put too much emphasis on that. you are correct in assuming that those results are due to problems in circulation, but it is the circulation in the cappilaries of your finger, which can depend on temperature, movement and many other irrelevant things.

To be practical, you need to have a sleep study that checks CO2 levels, which is a much better and more reliable and sensitive parameter to assess nocturnal hypoventilation. (some pulmonologists I have met think it is unimportant, but I try not to put my care in their hands, nor do I put it in the hands of those that think the world is flat or that rain is caused by god's tears, although they are fully entitled to believe what ever they want).

hope this helps.

Last edited by Annie59; 09-27-2010 at 11:06 AM.
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Old 09-27-2010, 01:00 PM #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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Old 09-27-2010, 02:21 PM #3
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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:
Respiratory Muscle Evaluation of the Patient With Neuromuscular Disease
Vera A. DePalo, MD, F. Dennis McCool, MD

Posted: 08/29/2002; Semin Respir Crit Care Med. 2002;23(3) © 2002 Thieme Medical Publishers

Abstract and Introduction
Abstract
This review presents clinically relevant issues regarding the assessment of respiratory muscles in individuals with neuromuscular disorders, and discusses the advantages and disadvantages of methods generally available to the clinician. Vital capacity (VC) and total lung capacity (TLC) are routinely measured in pulmonary function laboratories and are typically reduced in the context of severe respiratory muscle weakness, but the sensitivity and specificity of these measures are limited. Better measures of respiratory muscle weakness are maximal static inspiratory and expiratory pressures (PI max and PE max). PI max is reduced even with mild or moderate degrees of inspiratory muscle weakness, but low values also may be related to submaximal effort. To circumvent this problem, pressures can be measured using simpler maneuvers such as a maximal sniff. Specific tests of diaphragm function such as measurements of maximal transdiaphragmatic pressure are invasive and not routinely available to the clinician. Recently, noninvasive methods that specifically assess diaphragm function, such as diaphragm ultrasound of the zone of apposition and magnetic or electrophrenic nerve stimulation, have shown promise as new techniques for clinical use.
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Last edited by Chemar; 09-27-2010 at 02:45 PM. Reason: copyright at Medscape
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Old 09-27-2010, 02:46 PM #4
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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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Old 09-27-2010, 04:58 PM #5
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Thanks, Chemar. Sorry for the "boo-boo".

Medscape is a fantastic resource -- it really IS worth the small effort to join!
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Old 09-27-2010, 05:13 PM #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.

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