My first visit to see Dr Klimas and team (Success in the End)

[Ladycreole03]

muscle/breathing weakness and dysautonomia). But in your case, I am

Hi , I know old thread but just wondering. Is it common with ME to have weak breathing muscles? Its like I cant talk long or standup. My diaphragm and lungs seem so weak. I just dont know anymore and scared about that one. Did your weakness improve and do you get PEM? Thx!

 

[Gingergrrl]

Hi , I know old thread but just wondering. Is it common with ME to have weak breathing muscles? Its like I cant talk long or standup. My diaphragm and lungs seem so weak. I just dont know anymore and scared about that one. Did your weakness improve and do you get PEM? Thx!

I am not sure if it is common with ME to have weak breathing muscles and my diagnosis ultimately turned out not to be ME. Every specialist that I saw was struck by how profound my breathing/muscle weakness was and it was progressive. It was confusing to specialists b/c I had POTS, MCAS, and many diagnoses that are often co-morbid with ME/CFS (yet I did not have ME/CFS).

I did not have fatigue or PEM (in the way it is described by most people on PR) and my reactions were all instant vs. delayed. In my case there was no amount of rest that allowed my symptoms to improve. Once I tested positive (on multiple tests) for the calcium channel autoantibody (for LEMS), it became clear that I had an autoimmune neuromuscular issue that was affecting my muscles, especially my lungs & diaphragm.

All of it went into remission once I got the proper treatments for my specific situation (IVIG & Rituximab). I still take meds for other issues like POTS and Hashimoto's but the core muscle weakness and shortness of breath is in remission (hopefully forever). I hope this helps.

 

[Ladycreole03]

That is so awesome for you.
Were your oxygen sats affected?
Mines always remain pretty normal. It gas bwen averaging 96-97% mostly now but my original normal was always 98-100%.

 

[Inara]

Is it common with ME to have weak breathing muscles?

I would check for a myopathy or neuromuscular disease or whatever, just to be sure. This doesn't sound good and it would be good if an expert looks at that.

 

[Ladycreole03]

Thank you! Im trying. Drs exhaust you constantly brushing you off.

 

[Inara]

Thank you! Im trying. Drs exhaust you constantly brushing you off.

Yes, totally, I understand.

 

[Belbyr]

Just to stop by and give another update.

I think IVIG did make a difference but it was small. The other thing is I was not able to do the 12 weeks consistently. Between having trouble getting vein access a few times, COVID, waiting to get a port, and doctors trips... The 12 weeks was more like 18-20 weeks. It has now been almost 2 months since my last dose.

We retested using the Quest panel and it was reconfirmed positive for VGCC on theirs as well. Waiting to see how the IGGs and IGMs are doing and if insurance is going to approve another round.

I think I've been able to make my life better by trying to live life without over doing. Between getting good sleep, making some diet changes, and the biggest is not overdoing it has been helpful. Also knowing what is causing all of this pain has really lowered my stress levels.

Realizing that my PEM hits 2-3 days later and my mentality wanting me to push through is what can drive my GI tract, fatigue, and muscle pain off the cliff.