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:
Originally Posted by alice md
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.
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