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Hi Annie
I was interested to see your comments on PI Max & PE max. I am 47 & have had mild lupus for many years. In 2012, the condition seemed different in many ways but most disablingly weakness in arms, legs, torso. Aspiration at night and then most recently respiratory problems & very slight intermittent ptosis. PI max is 18.4 cms and PE Max 23 cms. 6 months ago they were 32 cms & 51 cms h20. Sniff test indicates that I have a weak diaphragm. I am anti achr negative and my SFEMG was not supportive of MG although the RNS showed 'decrement which seems a bit artefactual' which I think means operator error. I don't feel convinced that I have MG but I'm pretty sure that there is more than normal fatigability in my chest/arm muscles.
I just don't know whether or not to bash my way through the uncertain doctors or sit it out a bit longer to see if things settle or worsen. My resp doc thinks there probably is a neurological cause but doesn't know what so is sitting on the fence. Your thoughts would be really helpful.
Many thanks, Clare
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Clare, Welcome! I take it that no one has taken your situation seriously?
Your MIP is very bad. It is usually shown in a negative, such as -18.4. Do you live in the US? I'm only asking because ranges of tests can be different in other countries. Your MEP isn't great either.
In the US, if you have a MIP of -18.4, it's time to have a BiPap or be intubated! And since breathing is worse while sleeping, I have to wonder if you are getting enough oxygen!!! Has anyone even suggested an overnight oximetry for you?
I know a number of people who have both lupus and MG. It's not fun, but it happens. Would you mind sharing what drugs you're on for lupus? Some drugs for lupus aren't good for MG.
I'm frankly appalled at the lack of concern over your breathing stats. They should be doing that overnight oximetry, doing an arterial blood gas, redoing the breathing tests with a before without Mestinon and an after with Mestinon (or Tensilon).
They should redo the RNS AND do a SFEMG. It's pretty dangerous to assume that any decrement is "artifact!"
They should rerun the AChR antibody tests and send them to Mayo. They should do the MuSK test as well. AND they should check you out for LEMS. Antibody tests fluctuate and, depending upon what meds you are on for lupus, they might look negative when, in fact, they're not!
Also, has anyone done a simple chest x-ray to make sure that you don't have aspiration pneumonia?
Let me be blunt. If you have MG, and don't receive proper treatment, you can stop breathing and die. Do you think that would get a neurologist's attention? Good grief. I'm not saying that to scare you! But you need help right away. That level of poor breathing is NOT NORMAL and a cause needs to be determined right away.
And I'm not so sure you shouldn't be IN the hospital getting oxygen and being monitored! A lack of oxygen is very hard on the brain, heart, kidneys, and other tissues.
Have you seen a neurologist? If not, why not?!
Your pulmonologist needs to be working with a neurologist to figure this out. A MG expert would be best.
Situations such as yours makes me wonder why doctors even went to school in the first place. Breathing well is essential to life, and to drop the ball like this is not only stupid, but cruel.
What else can we do to help?
If you can't breathe well, you need to dial 911. The same goes for not swallowing or moving well. A MG crisis is serious, and being in a hospital immediately is what you should do!
I hope you can find someone to help you!!!
Annie