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


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Old 04-13-2018, 08:54 AM #1
ErinBear ErinBear is offline
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Default Trouble breathing, but normal pulse ox

I have a question. This is something I have never understood. My breathing is worse, and has been worsening for maybe a week. When I check with my home pulse oximeter, the readings are still within a good range, often very good. But I am struggling to breathe. I gather this is possible, but does anybody have an explanation for it? I am using my home non-invasive ventilator more frequently for now, and it is helping. I am still going to the hospital for plasmapheresis regularly and keeping up with my medications, so I am trying to do what I can. I don't know why I am doing worse. Thanks for any information you can share.

Take care,
Erin
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Old 04-13-2018, 11:25 AM #2
AnnieB3 AnnieB3 is offline
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Go in and be checked out! What if you have a PE (pulmonary embolism)? Or something else serious? The ONLY way to know is to be checked out. Please don't wait.


Annie
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Old 04-13-2018, 09:17 PM #3
ErinBear ErinBear is offline
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Hi AnnieB3,

I think it is probably my myasthenia gravis. I had plasmapheresis treatment today. Even though the nurses were concerned about me being weaker and having more trouble breathing (etc.), they did not recommend that I go to the ER right now. The treatment did help a bit for now. I still don't understand, but I guess there are a lot of things I don't understand about myasthenia gravis. I'm not sure what will happen, and yes, I will go to the ER in the days ahead if it seems necessary, I promise.

Take care,
Erin
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AnnieB3 (04-13-2018)
Old 04-15-2018, 10:58 AM #4
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Let me see if I can explain this. I asked my pulmonologist the same question. He said that my lungs process the air I receive normally so my pulse ox will stay in the normal range. The problem with my breathing is that my diaphragm is weak and therefore my lungs are having difficulty pumping. (Just in case you thought like I did that lungs are muscles, they are not. They are organs and the diaphragm is the muscle that pumps the lungs) Your pulse ox will remain in the normal range until your diaphragm basically stops working. This happened to me in ICU. My pulse ox was 96, but I was struggling to breathe. The nurses didn't realize what was happening and thought I was having a panic attack. They called my docs on-call partner who ordered Atavan (which should never be given to a patient with MG) Within 30 minutes my pulse ox dropped to 36 and I had to be intubated. So, long story short, with mg, your pulse ox will be fine until your diaphragm stops working and then it will drop very fast. Don't let anyone tell you that since your pulse ox is fine, your mg is fine. Hope this helps.
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Old 04-16-2018, 10:47 AM #5
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Dear Juanitad,

Thank you so much for this, although I'm so sorry for what happened to you. I've had the same thing happen to me, where the doctors told me I must be suffering from anxiety and I should try taking Ativan in the hospital. It just made it all worse! I'm so sorry you landed in the ICU and had to be intubated. That's really terrible. It seems like there is so much confusion and misunderstanding about how to treat myasthenia gravis. I understand it is a somewhat uncommon disease, but at least where I live, it seems most of the doctors still encounter it. I'm not their only patient. They should have better training in how to deal with it safely.

I did know some of this, that it is my diaphragm and chest wall muscles that are causing my breathing difficulty rather than my lungs. But thank you for your explanation, which really helps. I send lots of good wishes your way, and I hope you are doing as well as possible.

Take care,
Erin
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Old 04-16-2018, 06:11 PM #6
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If medical professionals don't want to think, they should take the Ativan! That is a classic thing they do to patients, so that patients will leave the staff alone while they are busy. And you know, we woman are prone to being full of anxiety . . .

Doctors who don't know what to do are prone to:

. . . then drugs.

A simple arterial blood gas would be a smart thing for doctors to do for you, Erin! Since O2 doesn't drop until late in the game, they could just find out WHY your body seems oxygen-starved. Hmm, that's just too logical.

You must just be depressed (kidding).

You might want to talk to a primary doctor or cardiologist about an echocardiogram, if you haven't had one lately. And a D-Dimer to make sure you don't have a PE. My best friend had a PE after IVIG. And they found out that she had APS (antiphospholipid antibody syndrome). Shortness of breath can be from things other than MG.

You have to advocate for yourself, even though you don't feel well. Work the system. This is just nuts! I'm sorry that you were both on the receiving end of this lack of thinking.


Annie

Last edited by AnnieB3; 04-17-2018 at 09:58 AM.
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Old 04-18-2018, 09:32 PM #7
Nac Mac Feegle Nac Mac Feegle is offline
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Default CPAP Machine?

Before I was diagnosed and treatment started, I was having trouble breathing well. I have a CPAP machine for sleep apnea, and found that resting with the machine helped quite a bit.

You might need to have a Doctor prescribe one for you. All the men and most of the women at the local MGFA group are on one of these machines.
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Old 06-01-2018, 05:11 AM #8
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[QUOTE=AnnieB3;1261640]If medical professionals don't want to think, they should take the Ativan! That is a classic thing they do to patients, so that patients will leave the staff alone while they are busy. And you know, we woman are prone to being full of anxiety . . . "

My daughter is in ICU on a ventilator and just started plasmapharesis last night because several doses of IVIG were not working.

They have given her ativan multiple times to calm her, but now I'm seeing that it shouldn't be given to MG patients. What is an alternative, safe drug for those on a venitilator (with agitation)?
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Old 06-01-2018, 11:16 PM #9
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The best thing I ever did was request that my pulmonary guy test me laying down/sitting down/standing up.
If there is a decrease of 15% from sitting to laying down, there is respiratory muscle weakness, Always caused by a neurological disorder.
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Old 06-02-2018, 12:25 AM #10
AnnieB3 AnnieB3 is offline
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Violet, I'm so sorry your daughter is doing poorly. I have no idea what they based their decision on to ventilate. Ativan is often necessary for intubated patients. What we were discussing is how professionals sometimes throw Ativan at anxious patients, ones who don't need the drug.

The ER doctors can adjust the Ativan dose downward to help, OR switch to a BiPAP IF that is not a dangerous thing to do. Is she on oxygen as well?.

I've attached some articles for you. If you are not in the hands of MG experts or neurologists who know how to manage a crisis, they might benefit from some of this information.

I'm not a doctor, so I can't advise you on anything. They sound as though they are trying everything to help your daughter. It's rough to watch a child go through something like this. But if she isn't breathing well, intubation will help her to relax those chest wall muscles, giving them time to become stronger.

What precipitated her crisis, if I might ask?

I encourage you to do a new thread, so that more people will see your question. Please don't forget to take care of yourself as well!

Annie
Attached Files
File Type: pdf MGCrisisExtubation.pdf (73.1 KB, 36 views)
File Type: pdf NonInvasiveVentilation.pdf (76.9 KB, 31 views)
File Type: pdf NMDiseaseCausingAcuteRespFailure.pdf (120.9 KB, 29 views)
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