Home PEx Lifestyle Health and Wellness
COMMUNITY NOTICE: If you are having trouble in your account access, please do send us a message at [email protected] for assistance.

Myasthenia Bulbar

Is there anyone here who knows someone with this disease?
My sister was dianosed with Myasthenia Bulbar and the hospital in our province (pampanga) recommended to bring her to St. Lukes because of the inavailability of doctors who specializes on this illness.

Now she can't even swallow her meds and she has difficulty in breathing. We got an appointment in St. Lukes, but each day that she waits is an extreme suffering, and my family can't bear to watch her suffer. I wish I can be with them (I'm an OFW).

I would greatly appreciate if you can share your thoughts and experiences so it can at least give us hope that this can be cured. And to my dear pexer doctors, kindly give your insights and recommendations.

Thanks in Advance.

Comments

  • Myasthenia gravis is a serious illness which can cause progressive weakness, difficulty in swallowing and breathing. It is usually divided into bulbar (involving the throat muscles, face, etc.) or diffused myasthenia (involving the extremities). It is very important to immediately bring the patient to a hospital because the patient can deteriorate further.
  • Thanks Kram..

    Because of the difficulty in swallowing, she can't barely eat even soft or liquids.. she was brought to a local hospital before but they said they don't have a facility for that kind of disease as it is very rare that they received patients of the same illness.

    I know that St. Lukes is very costly, but if that is our only option, we won't hesitate bringing her there.. she got an appointment tomorrow, but she's suffering each day.. like today, she have difficulty in breathing despite the oxygen appratus.. :depressed:
  • LesLes PEx Veteran ⭐⭐
    I'm sure St. Lukes isn't the only option, there are a lot of other tertiary hospitals in Metro Manila with competent neurologists.
  • Les is right. You can bring her to PGH or NKTI if the finances are lacking. She has to be stabilized first (airway, breathing, etc.) so she will need an oxygen supply. Hopefully it won't go as far as having to put a tube in her mouth to assist her breathing. Then comes the nutrition part. She has to eat so most likely another tube will be inserted through the nose down to the stomach (to feed her). The weakness will also be addressed by giving certain medicines to help improve her motor strength.
  • Thanks Les and Kram..

    She was brought to Makati Med earlier and received a treatment.
    The doctors said she is postive with Myasthenia Gravis, a very rare disease and that no cure was founded yet. They said that what they can do is to help ease her breathing and swallowing. They can only do preventive and not curative treatments.

    I guess I can only hope for a miracle now. I'm sure she can survive this attack, but she can no longer have a very "normal" life as she needs to monitor medication to ensure she gets enough rests and to not get sick.

Leave a Comment

BoldItalicStrikethroughOrdered listUnordered list
Emoji
Image
Align leftAlign centerAlign rightToggle HTML viewToggle full pageToggle lights
Drop image/file