When must a patient with Myasthenia Gravis be intubated when breathing difficulties occur?

[Jennifer Walsh]

I have been diagnosed with MG in 2001 and once again in 2008. I am currently experiencing breathing difficulties (alot!!) My breaths are very short, quick and shallow and I am also unable to walk much (with great difficulty)  My hands, arms and neck are also weak. I went to the hospital last night; they sent me home saying that I oxyginate better than someone who snores yet I still have much pain breathing. My chest hurts from simply being tired of breathing. When must I be intubated, put on a ventilator?
I am currently taking 120mg 3X/day of Mestinon and all they chose to do for me is up my meds by 60mg/day.
I am tired of dealing with ignorant doctors, I should have been prescribed 180mg of Mestinon Time Span slow release.
Please help me I am affraid my lungs will stop working all together.

[Jennifer Walsh]

During Myasthenic crisis, do the oxygen levels ever stay normal? Ten years ago, I went to the emergency; I could no longer talk, swallow my own saliva, breath without choking on every breath (all the muscles in my throat had apparently collapsed) yet my oxygen levels were normal 98 -99%. I wasn't intubated and doctors told my mother the next morning that they nearly lost me twice during the night.

[Christopher R Newey, DO]

Thanks for using the forum. I am happy to address your questions, and my answer will be based on the information you provided here. Please make sure you recognize that this forum is for educational purposes only, and it does not substitute for a formal office visit with your doctor.

Without the ability to obtain a history from you and examine you, I can not comment on whether or not you need surgery for your disc. however, I will try to provide you with some information regarding this matter.

First and foremost is that if you are currently having difficulties breathing and feel weak, you should be evaluated by a physician immediately.

Myasthenia gravis is an autoimmune disease in which the body makes antibodies that attack a recept located at the junction of the nerve and muscle. This causes impaired neural transmission leading to weakness of muscles. There are various forms of myasthenia gravis. These include ocular (affecting eyes predominantly), generalized (affecting the arms/legs/trunk predominantly), or mixed.  The typical symptoms of myasthenia are double vision, drooping eyelid, difficulty talking and swallowing, and weakness of the shoulders or hips. The weakness usually worsens as the day progresses. It is usually managed with immunsuppressants such as steroids or azathioprine. Other treatment options include IVIG or plasmapheresis. Medicines such as mestinon are used for symptomatic treatment.

Myasthenic crises occur when a person is having worsening of bulbar symptoms (flaccid dysarthria, dysphagia with regurgitation, chewing fatigue, etc), weak cough, and poor vital capacity (a measurement performed by respiratory therapist to assess lung volume). If intubation is required, the indications that are usually used include: fatigue with increasing breathing rate and declining tidal volumes (measured by respiratory therapist), hypoxemia (low oxygen levels) despite being given supplemental oxygen, increasing blood carbon dioxide, difficulty with secretions, vital capacity of 15mL/kg or less, negative inspiratory force (NIF; measured by respiratory therapist) less than 20-25cmH20, positive expiratory force less than 40cmH20. Of course, the clinical examination and history are also vital in the assessment.

I would recommend that you ensure your safety first and foremost. You should have your respiratory status evaluated. Once you are stable, you should follow up with a neurologist who specializes in neuromuscular diseases.

Thank you for using the forum, I hope you find this information useful, good luck.