Yeah, its me asking a question.

When I get up at night to go to the bathroom, my O2 saturation plummets. It has gone down as low as 87% but last night it went down to 85% and I could not breathe well. Even had a little chest pressure. It goes back up to 96% - 98% after a few minutes but sometimes it takes longer - like last night. Yes, I'll bring it up to a doctor at some point, although they already know about it and haven't done a damn thing yet (been a few years of that going on). Though they don't know about the 85% yet.

Has this happened to anyone else? Or, should I put it another way, has it happened to anyone who has an oximeter and then noticed it? It may be happening to some of you without you knowing about it. But do you ever get short of breath getting up at night? I know that muscles are weaker while we sleep. I simply cannot get a sufficient explanation from any of my doctors. Well, actually, no one has come up with even one explanation.

I've had a couple of overnight oximetry tests that showed nothing lower than 88%. My pulmy has declared 88% to be the magical cutoff for hypoxia or getting help. When it's 85% when you are awake, even if it's after getting up to pee, you'd think they might be concerned. I was. Supposedly my heart and lungs are fine. And since my neurologist didn't even bother with a clinical exam this last time, I "suppose" that my MG is fine. Wow, did you know that neuros are so smart that they can now tell how your MG is by simply looking at you? If they can, why can't they diagnose MG that way?

My suspicion is that it is somehow related to a circulatory issue. If you fill a "inflexible glass tube" with water and then "see saw" it back and forth, the water runs freely, right? But if you have a "flexible tube" artery that is not all the way open and go from a horizontal to a vertical position, wouldn't that affect the blood flow and, therefore, the oxygen? Sounds logical to me.

I'm super tired of doctoring and almost don't want to go through feeling like a ping-pong ball again, with doctors in charge of the mallets. I'd be grateful for any ideas you might have. Thanks!

Annie

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.

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

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.

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

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

Thanks, Chemar. Sorry for the "boo-boo".

Medscape is a fantastic resource -- it really IS worth the small effort to join!

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

Alice, I love sarcasm. What I don't love is a pulmonologist who thinks that 66% oxygen saturation while sleeping during my crisis doesn't even warrant a Bi-Pap or C-Pap. No way would she think I should have one now. Yes, I'm getting a second opinion.

When I've had the overnight oximetry done, my oximeter corresponds exactly to theirs. And that reading of 85% was while lying on my bed, not moving, perfectly hydrated, no extremes of temperature and with new batteries in the oximeter. That combined with my extreme shortness of breath, which may or may not be MG, is what is concerning. I can't sleep during sleep studies or I'd do that. I appreciate all of your feedback.

Annie59, I'm not an airliner but I sort of feel like I've been hijacked. Not that your questions don't need answers too. 95%, like Alice inferred, can be okay for some and not for others. It all depends upon you overall health and exactly what is going on. If you can find a good pulmonologist who will do arterial blood gases, as well as breathing tests, that would be best. Have they done a chest CT? Have you been assessed by a cardiologist? Shortness of breath can be from more than one reason, if when you have MG. When they do oximetry in the ER, make sure you are walking around doing it. MG is all about weakness upon exertion and if your MG is doing worse, those numbers will tank while walking or shortly after stopping (after your heart stops going higher). When MG is bad and oxygen is relatively lower, the heart will beat faster to get you more oxygen. So it's not only the oxygen saturation but what your heart is doing (at rest). Good ER docs will also do a beside spirometry or at least a peak flow meter. Do you have a peak flow meter? Knowing what your "normal" readings are will help them to determine what is too low. Alice had good advice about getting the best doctors you can, who will then be your "backup" when you do have to go to the ER.

Jana, I think everyone needs to be specific - now that there are two of us named Annie - which one of us they are referring to. I think you posted that for Annie59. Thanks for the info for Annie59.

I would appreciate any other feedback anyone would have. Thanks.

Annie

YIKES!!! AnnieB3, I didn't even "catch" that it wasn't YOU!! My brain just isn't working -- as you can tell by my previous post (copyright issue) -- arrrgghhhh!!!

I knew about this article/abstract -- and thought it might help -- and am glad that Annie59 joined Medscape and might find it of some use.

Hi, Annie59!! *waving*