Myasthenia Gravis

What does a seizure look like? My mom had a stroke and then brain surgery. It's been 8 months since her surgery. She was recently in the hospital. They told her she was having seizures. How do they test for seizures? They want her to take Keppra XR 500 MG 2 pills. I am worried. Any advice or information is most welcome

Part 1 of 2 Sometime in 2022, I started bleeding and just I didn’t stop.

It would help to have a little background. At that time, I was a 43 year old woman with 2 children. I was newly divorced and trying to feel very hot, and very datable. I mean, I was wearing lingerie!

And then one day, my period came, and it just didn’t stop.

When I say “didn’t stop”, I mean this was a mess. Postpartum levels of carnage. I was soaking through tampons and pads, and I could hardly leave the house. And those little thong bodysuits I had recently acquired? Please.

This was unusual for me, so I made an appointment with an OBGYN. We thought that perhaps the stress of my divorce had thrown my cycle off. She had me wait it out. Weeks later; I was dizzy, depressed, and exhausted. I went into urgent care and I told the doctor that every woman on my maternal side has had some sort of cancer. (I was so afraid that I was a newly single parent, and now I also had cancer. It felt like a ‘universe piling on’ type of situation. This was not a chill time for me.)

They did tests. Pelvic exams, uterine biopsies. Those seemed to be clear, and what my gynecologist eventually said to me changed my life. She said, “Well, Natalie, you’re 43. This might simply be perimenopause.”

This was not welcome news. I thought I was way too young for menopause, I didn’t actually understand what perimenopause was, and I had no idea what my next move ought to be.

So, I went home and did some digging.

Turns out, 43 is exactly the right age for the first stages of menopause to creep in. Our ovaries are slowing down, and our entire body can be affected. The symptoms might look different for lots of folks, but most of us will have some shared experiences. (I’m using ‘symptoms’ because menopause is caused by a hormone deficiency, and even though it happens to everyone with certain reproductive parts- I’ve learned more and more about ways that we can actually treat it.)

It’s very possible that nobody will tell us this is about to happen. Unlike pregnancy, women don’t tend to talk to each other about menopause. Doctors don’t tend to give us a head’s up that we can start looking out for signs and symptoms. Largely, we will feel unseen and unsupported as we try to navigate a very intense change that half of the human population is scheduled to go through.

1. Your cycle will change. Less frequent or sporadic periods are common, but what is also common is relentless bleeding. When you walk around and see 40-50 year old women going about their business, it’s very possible that many of them have been bleeding for months and months, without relief. Fun!

2. You gain weight! Hormones do so much to control our weight and metabolism, and even small changes can make a big difference. Quite suddenly, most of your clothes might not fit, and your decades old diet and exercise habits might not be working for you. Belly weight seems to be the most common- I’ve given away a lot of pants this year.

3. Your vagina will change. Mine became more sensitive, generally. I need more gentleness during any genital contact but especially during penetration, I’m much more prone to yeast and BV, and for the first time in my life, I constantly need to use lubricant. My body feels tender, and I’m learning to treat it with the care it now needs.

The more openly I talk about perimenopause- both to friends and on social media- the more symptoms I’m made aware of. Brain fog, fatigue, anxiety, lack of sleep, gut issues, food and alcohol intolerance, memory loss, body aches- the list goes on. It’s mostly women who are experiencing these symptoms, and women are notorious for soldiering through pain and discomfort (out of necessity), so it really takes a lot for many women to open up about what’s happening with them. For many of us, it takes multiple doctor visits, and often even switching doctors, to receive decent information and care.

As some of us have been doing this leg work, I think it’s helpful to share what we’ve found. For me, here are some treatments that have saved my quality of life during this time.

1. Hormone replacement therapy. That’s right- HRT is for everyone, and it can save lives! To control my own bleeding; I tried Estradiol, a hormonal birth control pill, and a hormonal IUD. None of those helped (and in fact, the IUD led to constant bacterial infection and discomfort). What eventually has helped is Synd, an oral contraceptive containing only drospirenone, which is a progestin. I’ve been taking Slynd for 3 months, and besides some initial weight gain, I haven’t noticed negative side effects. A very positive side effect has been stopping menstruation, which is significant for me due to the distressingly heavy bleeding I was experiencing. I have n

Part 2 of 2 o affiliation with this brand, I just want to be transparent about what has worked.

2. Turmeric is said to be an anti-inflammatory substance. I take 1,000-2,000 mg per day.

3. Water is always important, but I’ve found myself getting constipated more easily. Thus, staying very hydrated is helpful.

4. During my workouts, I now focus less on cardio, and more on resistance training. Not only does it feel good to push and pull heavy things, but it feels good to know I’m battling back against bone and muscle loss- both symptoms of an estrogen drop.

5. Because I’m working to build muscle (rather than constantly fighting to lose weight), I’m eating far more protein than I was a year ago. Generally, I look and feel much stronger.

6. For my gut and vaginal health, I take a raw probiotic daily. These aren’t inexpensive, but when I am consistent with them, I’ve had far fewer issues with vaginal infections after sex (or sweaty workouts).

7. I use vaginal lubricant for any penetration now. It took me a bit to make reaching for the lube a habit, but I know that it’s what my body needs. Sex feels fun and manageable once again.

I’m only now entering into my 2nd year of perimenopause, and this phase can take 10 years. 10 years! I know that my habits, tactics, and long term health strategies will change over time. My hope is that with more doctors acknowledging that menopause comes with symptoms that can actually be treated, and with more people sharing personal experiences, we can make this transition more smooth and healthy for everyone.

It’s just very good to know that we aren’t alone. And if we can be brave and talk to someone about what’s happening with our bodies, we can hopefully start to get appropriate support. The time for thong bodysuits has not yet passed.

Godspeed, one and all.

Hi, my name is Nicksoccer21. I'm here because
I have had seroneg MG x24 yrs & am being worked up for LEMS now. Legs def weaker.#MightyTogether #MyastheniaGravis

I went to our cozy Starbucks on Friday to have me time and have my virtual meeting with my psychiatrist. I told him my anxiety was so freaking high one day it filtered to the next day. I also told him I having depression but it’s on and off. I was depressed for a whole week with very scary bad thoughts. He wanted to add 50 mg to my 100 mg of lamtrigine. I told him how I figured out to do a PDF file/ get it on a spreadsheet/fill out a form and send it back to someone through email. I was so proud of myself. It’s the first time I have done that. He was very proud of me. I told him that I was at Starbucks he was happy that I came out of my comfort zone. He likes how I challenge myself. I told him that I brought a book about DBT he was happy that I’m doing research. I will be starting therapy for DBT in November once my friend who is an insurance broker takes the second half of Blue Cross Blue Shield class. I told him that it feels like my break down is slowly starting. This around the time I had it. He said sounds like seasonal depression. He wants to see me December 1st. By then I should be in therapy. He wants me to take 100mg in the morning and 50 at night. Since it’s getting lighter outside and colder he wants me to get out and change my environment, do my coping skills and do not isolate.

So, I had my virtual appointment with psychiatrist it went very good. I mentioned that I get very high when I go shopping it not like I come out with 5 bags in both hands. I only buy 2 things he said it could escalate to bigger shopping spree since I get a high from it. So I mentioned that my son, his girlfriend and I are going to Chicago on November 23 to look at the stores on Michigan ave. He said can your son hold your credit cards I literally busted out laughing 😂 I said no he won’t give it back. Even if I do give it to him I have them on my Apple Pay wallet. We also talked about my caffeine intake. I told him I only have 1 coffee at Starbucks (blonde roasted) he wanted to know how much caffeine is that. It’s 479 mg if I don’t go to Starbucks I only have 1 French roasted coffee only 55 if I’m stressed I will have 2 more. He said why do you need all that caffeine I told him it calms me down. #BorderlinePersonalityDisorder #PTSD #GeneralizedAnxietyDisorder

Hi, my name is mgsnowflake.

#MightyTogether #Depression #MyastheniaGravis

Hi, my name is Drew. I'm here because as a MG/HS warrior I’m constantly trying to hide my illnesses from everyone. I literally have this thought in my head that I’m “faking” it or that it’s all in my head and if I just push myself I will be “normal” I’m sure just by my own thoughts & worrying about how others view me I’m making myself sicker. I’ve recently started using a cane and I think I will soon need a mobility scooter or wheelchair. Do

#MightyTogether #Depression #Anxiety #PTSD #ADHD #MyastheniaGravis #hidradentitissupperativa

Hi, my name is mikeintexas. I'm here because my MG has progressed this year and I’m looking for more info.

#MightyTogether #MyastheniaGravis