[Michele Ayers]

HI’

I take a multivitamin,

then in alphabetical order..hehhe

B, C, Calcium, D, E, Magnesium, Turmeric, Zinc

plus my regular…prednisone, synthroid, lexapro, wellbutrin

plus omeprazole and sometimes an inhaler!

gosh..do you remember when we were kids and didn’t take any?

DO YOU CARRY A CARD OR WEAR A BRACELET that identifies MG for first responders?

Thanks michele

 

[Michele Ayers]

Thank you everyone for sharing. I would like to find a neuro-opthalmologist.

I am not comfortable driving at night anymore yet I am the safest drive of my friends!…go figure!

I don’t drive downtown/Los Angeles at night anymore. IT’s just too difficult to see with blurred and double vision even with my current lenses.

I do close one eye sometimes to see better…it’s amazing how my eyes appear almost closed yet I can see out of them during the daytime.

Around 4pm or sometimes earlier my left eye closes completely…it’s just too difficult to keep open.

Maybe  I should try the patch…except that I live with my mom and she would wonder…haven’t told her at this point.

I do worry about losing my vision…as I am having to change prescriptions more often.

Does anyone use those glasses that hold up your eyelid? Do they hurt?  How long did it take to get used to them?

Is there any research on people with myasthenia who also use a CPAP machine>? Are they at higher risk for a crisis?

Thank you everyone for sharing your stories and thoughtful suggestions.

Sincerely, michele

[Michele Ayers]

OH, wow..I wish I had read that sooner…thankyou Jodi for your 2021 post on dentistry..do you have any updates since you wrote?

I have had a lot of dental work and I have been fortunate so far but would love to print something out for my dentist.

 

Thank you. michele

[Michele Ayers]

I gained quite a bit of weight when I was first diagnosed and put on 30 mg. of prednisone. And my face “fell down”..or is that the mgravis?

I’ve been fortunate to reduce my prednisone (which is discouraging to my left eye as it closes around 4pm) but it’s worth it. The mestinon was also dropped due to side effects.

I don’t agree with the “FAT” suggestion…it is very difficult…but simple steps…and loving yourself…

I agree with increasing water, walking..or some other exercise you can do..and having fun!..a hobby..an interest..oh, and doing things for others..seriously..food is on my mind ALL the time…so anything to get myself busy helps…but busy can be fun…reading a book..counts too!

and YES..I was always STARVING while on prednisone at the higher dose…I couldn’t believe how much I could eat and still feel so hungry! Good Luck!

You are not alone!….and you are beautiful..weight is not a measure of beauty!

[Michele Ayers]

Hi

So, I was diagnosed about a year ago although I think I had ocular myesthenia prior to my diagnosis. I recently read about people experiencing breathlessness and sweating. Oh, my gosh! So THAT”S where that comes from!. Oh, sorry This is the mood and medication site..

yes, antidepressants and mg meds. I know I HAVE/NEED to take the antidepressants for the rest of my life. There is a noticeable different for me if I don’t. I take bupropion and escitalopram.

The mestinon made me crazy with side effects so I was able to go off of it. The downside is my left eye goes to sleep/completely shut before the rest of my body wants to. It’s 4pm and my eye is almost closed…but it’s worth not having the side effects of the mestionon.

Is it the prednisone that is causing unpredictable sweating and breathlessness? OR the disease itself?

I get reminded constantly by well meaning friends that I am 1. breathing hard, 2. must be out of shape. or asking me, “Are you ok?” It’s great that they care but it’s uncomfortable as well, right?

The sweating is very embarrassing as it is random and not my whole body..but as though a faucet was turned on at the top of my head and running down my face. Seriously! it’s not normal sweating..

I was singing and left the stage in the middle of the song while the keyboard player kept playing. I ran to the restroom and stuck my head under the water then came back and finished the song. IT only was a moment’s relief because it started all over again.

I am grateful to still be able to sing. I’m afraid of what’s to come. I have now generalized mg, my jaw is tight and my TMJ is more severe. I sometimes get stabbing pains when I chew. I don’t have the problem yet with swallowing but chewing is definitely tiring. I just can’t open my mouth as wide and it’s small to begin with.

Yesterday I had NO energy…the day before I got a lot done because it was a good day. I am learning to take advantage of those days.

OH, someone wrote about oxygen and breathing. I do use a cpap for apnea and I really like it. I’m sure it’s very helpful now that I have the mg diagnosis as well. Someone wrote that the cpap didn’t work because theirs didn’t let you exhale on your own. Mine does.

Ok..so yes, I’m complaining today….I got a new prescription for glasses just 2 months ago…not working for my left eye now. I seem to go along and then I am made more and more aware of mg in my daily life.

I’ve only told my siblings and a few close friends…not my mom or my kids..(mom’s 95 and I take care of her…I would become her next “project” if she knew)

oh, starting to get more headaches…I never really had many….anyone else?

Thank you everyone…

I check in only occasionally with my counselor now.I think I may try someone new.

and I’m looking to find a new doctor….one who has more patients with mg.s

I did ask her about going off prednisone for a non steroid treatment but she said that the list of 7 I showed her had many more side effects.

thank you…let me know if I’ve violated forum rules..as my topics were varied…perhaps they should have been on my profile page?

THank you so much for this site. Sincerely, michele

 

oh, I realize, especially since taking care of mom…even if I don’t have a lot of energy..I need to get “off campus” daily…even if it’s just a car ride to a scenic point.

[Michele Ayers]

THank you Debbie Butler

You made me laugh and smile..your message was a hug

…my left eye is closed since it’s after 7pm..I’m so glad I signed on

I wish you the best

Sincerely,

michele

[Michele Ayers]

Thank you Jodi for your response…

I just erased my reply as I found myself complaining too much. I appreciate everyone on this site sharing as it makes me not feel alone…

you know, I was able to go see friends in The Sound Of Music a couple of days ago…and I was applauding and had to stop and rest my arms…and then start clapping again…and then stop…I couldn’t keep my arms up…is that part of it? or is it just poor upper body strength associated with age?

it surprised me….but the show was fun! and I am grateful!…and for this site!…thank you all! and thank you Jodi!

Sincerely, michele

[Michele Ayers]

HI

droopy eye..especially left….closed by evening…too hard to keep open

then double vision and worsening sight..blurry and need more correction

new rx for glasses but already need a stronger prescription!

rx usually lasts a year or two..this time only 4 months…is blindness a factor?

some days I have no energy at all..none..other days are fine…

lots of weight gain from incresased appetite with prednisone

so, definitely that can be slowing me down…just feel sluggish

belly pain and now headaches..but mostly stomach pain every day…bloated…

can’t wear any tight clothes ..I feel like  asnowan

the pills could be part of my problem..but I need to take them

so..that’s my story…so far…

anyone else dealing with stomach and bloating issues? it’s as thought I swallowed 3 bowling balls!
thanks

love to you all

michele

 

 

[Michele Ayers]

oh, Douglas..I’m so sorry

I hope to be as strong and appreciative of music around me when I can’t sing anymore…

thank you for sharing. I want to be able to accept and not be so fearful

michele

 

[Michele Ayers]

oh, my gosh..this scares me the most! well, that and dying..and blindness…well, everything about mg!

I AM a singer…and I’m trying to sing as much as I can because I don’t know when I won’t be able to anymore.

so, prednisone helps, Mary Ann?

I have less breath control. I can’t sing as long on a phrase….sometimes it’s not as clear…small differences so far vocally..

mostly breath related.

well, I just made new business cards..and  the order was accidentally

cancelled 2 days ago by vistaprint..and I thought “great! I didn’t want to do it anyway”…

but then today I reordered…I love to sing..and yet I don’t most days..I feel disconnected..

but then when I do perform…I am alive…so I need to do it as long as I can and not take it for granted.

I’m glad to hear you’re singing for enjoyment Mary Anne! I need to do that more!

oh, I wanted to share that my girlfriend and I were out last week and we heard someone singing very quietly at the table across from us…they were singing Happy Birthday…

all of a sudden (sometimes I act before I think) I asked the people at the table the name of the birthday man….they told me and I said in a medium voice to a medium room in a medium restaurant…”It’s Maynard’s Birthday..let’s all sing!” and most of the people in the restaurant sang Happy Birthday to Maynard!…it was so fun!..and people were smiling because they were having fun singing too!…as my girlfriend and I were getting ready to pay the check ..the waitress said, “It’s been taken care of…”…I just wish she had told us before the people had left!…the birthday family had paid our bill!..but the joy was in leading the restaurant in song and seeing the joy

so..what keeps me going when I want to give up..is seeing teh joy it brings to others and to myself

 

 

 

[Michele Ayers]

I Just don’t know what to do with this.

I’ve had 2 vaccines and 2 boosters.

It has been hard enough without MG to be in this covid world.

I have limited social activities to the max…before I knew I had mg because I am helping my 95 year old mother..and need to protect her.

I feel I dropped out of life even more now that I have MG. I have performed singing with a mask…but I want to see friends and take a dance class!..and covid is rising in LA..my friends are getting sick who were vaxed and boosted..and I haven’t seen my friends who aren’t vaxed..that only seems wise…but it’s mentally exhausting, right/? I”m so glad I found this site…thanks

[Michele Ayers]

Thank you Michelle! I am so glad you have this forum/site and I am happy to hear you are in remission. I ( she/her) was recently diagnosed and look forward to gaining from your knowledge and personal experiences. My first signs have been ocular and I am on prednisone and mestinon. Do you know anyone who has tried the newest fda approved medication? I am very nervous about losing my voice as I am a singer ( retired teacher) and I’m trying to record and perform as much as I can before I lose it. Thank you for welcoming me to this site. I am very appreciative. Michele

[Michele Ayers]

oh, my..thank you for the story of your journey and for your humor! and positivity!

may I use your quote? “I have mg..it doesn’t have me”

Thank you Debbie!

 

 

 

[Michele Ayers]

Thank you Patricia! I really appreciate your response.

Yes, I used to also “pick up everything” being a teacher…chairs, small childnre…

and working for Pepsi…building towering displays in markets

yesterday people were clapping for me!..singing on the nursing home circuit…want to do it as long as I can because I understand a lot of people can lose their voice and worse…my piano playing friend and I had so much fun…my first singing teacher turned 100 and it was where she lives now…I move from denial to YIKES..and as things are increasing I”m in YIKES mode more often..not trying to be funny..just scared I guess…thanks for your kind words…I wish you the best Patricia! Hugs, michelep.s. does your treatment involve weight lifting?

also I have experiencing cramping in my feet and toes..never had that before..is it related?