[Eleanor]

I was diagnosed with MG in 2015 after taking Cipro for severe pneumonia several months prior. I could barely walk at all and my entire body felt heavy and weak. Fortunately my primary doctor’s NP recognized my symptoms and immediately called the private number for a neurologist who specializes in Myasthenia.
A few years ago, I started having severe muscle cramping and was told to eat lots of bananas and take magnesium. My cramps became worse and I broke out in a rash over most of my body. So I immediately stopped the magnesium and bananas. The cramping didn’t completely go away but did improve and the rash disappeared.
Since then I started taking peppermint flavoring in water prior to meals to prevent swallowing difficulties as recommended by a NP as an alternative to the expensive peppermint capsules. I also read to try coconut oil mixed with pure “therapeutic” peppermint from a local health food store. It’s $11 for a tiny bottle but it doesn’t take much. I add about 20 drops to a cup of coconut oil and mix well until smooth then put in an airtight container. At night I rub this on my toes, feet and ankles. I’ve never had those horrible, painful cramps since. I’m fortunate to have a neurologist who is an expert in Myasthenia and understands every patient is different. He allows me to decide if I need to take an extra dose of  generic Mestinon.  I’ve shared with him my experience with the peppermint and he approves.
I’ve only had one crisis that required hospitalization for 4 days but no ventilation.  But it was a frightening experience.  I monitor my symptoms carefully and when a flare up starts, I go to bed, take prednisone along with my Mestinon and drink liquids  until it passes. I also have a rescue inhaler I use. This works for me. If my breathing were to become very labored or shallow I would definitely go to the hospital.
I was given a medical alert card at a Myasthenia support group that states I have Myasthenia and not to use ambu bag on me. However, I somehow lost that card and haven’t been able to find another one. The support group was disbanded during Covid and because one of the leaders passed away was not started back up again.
If anyone knows where to get one of those medic alert cards I would appreciate the information.
They call this disease the “ snowflake” disease for a reason. We are all different.

[Eleanor]

I have fallen often throughout my life. Was diagnosed with MG in 2015. I’m now 78 and two weeks ago I tripped over a concrete parking barrier and severely bruised my left leg, ankle and knee. My entire left leg is swollen and black with red splotches and painful.

X-ray and MRI showed nothing broken. Then 3 days ago I fell and this time I broke my left foot and caused more injury to my left knee and ankle. I find I don’t pick my left leg up high enough to avoid stumbling or tripping over things. I have problems walking up stairs but can go down stairs ok. So far nothing has helped. I have both a rollator walker and a small battery operated scooter. I went 2 years without needing the scooter. But now have to use it. I went a year without using my walker but have needed it for the past month. I’m being tapered off prednisone 10 mg so don’t know if that has any effect or not. I had much more energy when taking the prednisone.

Ellie

[Eleanor]

My dr just suggested taking Biotin for problems I’m having with my toenails and fingernails. Has anyone had any problems taking Biotin?

thanks