Myasthenia Gravis

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Hair Loss

I had a biopsy and bloodwork that confirms Systemic Lupus. I have another month before I am able to see a RA doctor. Appointments are 3 months out for new patients. My dermatologist prescribed 40 mg of Prednisone daily and 200 mg of Hydroxychloroquine. I have been in a flare since August. My hair is falling out daily. It is the full strand not breakage. The bald spots are the size of a nickel. Does anyone know how to treat this?

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Company Required Career Path Goals

As someone with Myasthenia Gravis, I’m extremely careful about using any muscles and how I use them to excess. It’s critical I do so to protect my health.

My employer is a very large international manufacturer and distributor, and rolled out a requirement this year that all employees must have a career path and advancement plan.

What would be a constructive or diplomatic way to point out to this employer this new requirement is not appropriate given that I’m lucky to be able to see at the end of my workday, let alone pursue career advancement? #MyastheniaGravis

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Taking a break #BorderlinePersonalityDisorder #PTSD #GeneralizedAnxietyDisorder

I happy that I did my 2 major walks yesterday now I’m paying the price. My tendinitis on the bone in back of my foot is very sore and my lower back is killing me. So I am taking a break from walking today. The arthritis in my lower back is the main reason I go to the chiropractor. I took 800 mg of ibuprofen so hopefully that helps.

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Seronegative Myasthenia Gravis

Hi, I'm Suzie. I have #myalgic Encephalomyelitis However, I have also been undergoing testing to see if I have #myastheniagravis So far I have not tested positive for any antibodies but l hit on all the symptoms. It took me some time to realize that there was something else going on that wasn't related to the #mecfs I have a single fiber EMG next Thursday and I am really hoping it will help me get a diagnosis so I can get some help with these additional symptoms. The photo below was from this last summer. The eyebrow ptosis, breathing, and swallowing issues have only been getting worse. I'd love to chat with someone who has experience with these issues just to help validate my own experience.

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Anxiety landed me in the hospital

Saturday I had the mother of all panic attacks. Took all my oral meds and was still panicking. The Psych nurse told me to go to the ER. They gave my 1 more mg on top of the .5 I took at home of Ativan. My doctors have me at home resting for 3 days. That makes me anxious too. Meds are working better though. May need to change jobs. I meet with my therapist tomorrow to decide next steps. Praying for a plan I can stick to. Anyone else struggling with anxiety who can relate or have a story of improvement? Hope would be a nice thing to hear.
#Anxiety #Bipolar2

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Going to start methotrexate for rheumatoid arthritis. A little anxious due to the long list of side effects. Anything I should expect?

I take my first dose of methotrexate 10mg this Sunday. I got prescribed 1 mg of folic acid daily to take also. Just wanted to hear some of the most common side effects you’ve experienced so I have a more realistic view on what to look out for. #RheumatoidArthritis #Arthritis #InflammatoryArthritis

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What advice do you have for someone searching for a rare disease diagnosis?

Between managing symptoms, juggling doctors’ appointments, and trying to find a name for what you’re experiencing, the journey to a rare disease diagnosis can be a bumpy one. That’s why it helps to have a community that “gets it” in your corner.

If you’ve been through the rare disease diagnostic process before, what advice do you have for someone just starting their search for answers? Do you have any tips for communicating with health care providers?

And remember, no matter where you are in your rare disease journey, you’re your own best health advocate. We’re cheering you on!

✏️ P.S. We’re creating a story with one of our partners, Catalyst, to raise awareness around late-onset rare disease. We may use your answer in an upcoming story on The Mighty.

💡 If you’re looking for more resources on navigating life with a rare disease, check out Catalyst’s new program at Many Faces of LEMS - lemsaware

#RareDisease #LambertEatonMyasthenicSyndrome #MyastheniaGravis #LungCancer #SCLC #CheckInWithMe #Spoonie #MentalHealth #Caregiving #MuscularDystrophy #IntravenousImmunoglobulin

Many Faces of LEMS - lemsaware

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Navigating This Journey

Part 1 of 2 I’ve gone through most of my life feeling off-kilter. Growing up as the “baby” of the family I’ve simply thought I was spoiled and needed to grow up! However, after two failed marriages and on track to ruin my third, I finally agreed to attend counseling. Thankfully, that therapist helped identify I had been living with undiagnosed depression for most of my life.

I consulted my doctor, we addressed my condition with medication, and all of the sudden (well, maybe more like a month’s time) I felt better. It was like night and day. Life isn’t perfect, however it does not feel like everything is hopeless every day. And, my husband definitely appreciated the change!

Now I could process thoughts, situations, relationships with a clearer mind. Things could be managed without instant negativity, defensiveness, doom. It did not change me to a “morning person”, but I didn’t wake up with dread at the thought of facing another day. My journey with depression using medication only, has been going on for about 13 years. Therapy had not been part of my whole healing… yet.

Cut to 2019 when an exciting new adventure would begin. I started feeling weakness in my eyes, while working on a long, intricate art project. Wearing magnifying eyewear doing detail work, I would remove the eyewear and my eyes would feel swollen and puffy with slight double-vision. I attributed it to the eyewear, as the project took me a long time (round two months) to complete. I brushed it off until March of 2020.

I had driven to Idaho to visit my daughter and grandsons, arriving with one of my eyelids slightly closed. My daughter also noticed it, but neither of us thought much of it. After a week of visiting, it was time to drive back home. The same eyelid was still a big droopy, but no other issues. That is until I got further into my drive. It would become very droopy then reopen, become droopy again, reopen and kept doing that for a bit.

When I arrived near Marsing, Idaho I wanted to stop at the Lizard Butte site. It’s a big rock mountain with a giant white cross at the top. Getting a photograph of the Snake River from the top of that mountain would be amazing. Okay, it’s probably not technically a mountain, but that day it felt like one!

I drove into the open gate and followed the dirt road to a small stadium area at the base of the hill. The terrain was rocky and a bit challenging to navigate. I am a clumsy person at times, however this had me feeling like I had no coordination at all.

At a quarter of the way up my breathing was labored, more so than if I took a short sprint to catch up with someone. In fact, trying to suck in air I was gasping audibly. Yet, I pushed through and made it to the top. Once there, I stopped and waited for my breath to return to normal, simply attributing this struggle to being quite badly out of shape. Telling myself “I’m old, out of shape, the air is probably thinner in Idaho”, anything that seemed to make sense. Then, looking up and out into the horizon and taking in the gorgeous scenery of the area and the Snake River, I decided the climb was worth it; gasping lungs and all.

After taking my photos, I made it down the hill back to my vehicle. I was met by an older man with a pristine white beard. He asked what I was doing, very friendly, however explained that I should not be there. I told him I simply wanted a photo from the top and apologized for trespassing. He remained polite and friendly stating he was the area caretaker and the gates should not have been open.

We chatted for a while and I learned all about the Lizard Butte hill, the cross, and he area all around. He was descendent of people migrating from the other side of the Mississippi and East Coast looking for their fortunes and Promised Lands. This “brief” pit stop cost me about an hour of travel time, however it was a special encounter I continue to enjoy reminiscing of.

So I continue my journey back home and long story short, my eyelid had nearly drooped to close and site had progressed to having double-vision. With no real options, I continued my drive home with extreme caution. No one was harmed in that drive!

Now I had to find out what was wrong. I called my optometrist, explained my symptoms, but they had no information, or seemingly, interest in helping me figure it out. Next I called my regular doctor and was told they “leave the eye issues to the eye doctors”, also not showing much interest in helping seek out answers. Soooo, where do I go from here?!

I told my husband, I had an upcoming appointment with my ophthalmologist, and her being the most amazing doctor, she will either solve the mystery, or get me on track

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Navigating This Journey

Part 2 of 2 to find an answer. And you know, she did!

I explained to her my symptoms, told her about my drive home from Idaho, and she instantly examined my eyes, put in an order for an MRI, and one week later we had the answer. Myasthenia Gravis.

Within a month I was seeing a neurologist and learning about the fun that is MG, I had to look forward to, assuming it would progress like the pamphlet said.

Myasthenia Gravis, or MG, is a rare autoimmune disorder / disease that is considered a disability, however with proper treatment, most people can remain physically active. MG affects ones muscles by antibodies blocking the receptors that cause muscles to contract. Essentially, my immune system mistakenly attacks the connection between my nerves and muscles. The muscles most affected are those controlling my eyelids, eye movement, breathing, swallowing, facial, and shoulders.

It seems most women are most affected in their 20’s and 30’s and men in their late middle age. Weirdly enough, I acquired this around age 55! Gees, man. Not fair.

Eventually, my MG progressed so much I had to take a leave of absence from work in June of 2020, which was happening in concert with Covid and lockdown. Ultimately a good thing for me, as due to a weakened immune system, I was at high risk being exposed to even a common cold.

Once the MG began to progress to bad, it seemed to upgrade to worse with the blink, rather droop of an eye. If I lay down, my lungs felt like they were collapsing, sometimes I couldn’t hold anything in my hands, or easily stand up to walk to the bathroom. My head was typically resting on one shoulder or the other, at least one eye closed, often both. My husband had to bathe and dress me, I couldn’t chew as my jaws were affected, and couldn’t pass the time easily with art or television as I couldn’t see or hardly control my hands. It was a very dark period in my life.

I cried while leaning against Michael as he put on my clothes, I felt hopeless thinking I’m never going to be able to move on my own again. I worried about my mom when she came over to help. She was active, but at 75 she is almost taking care of a baby again. I also worried. because we had lost my sister to autoimmune cirrhosis in 2014. While my MG was not at high risk for being fatal, I worried about my situation triggering her. This was definitely a dark time that wreaked havoc on my depression.

However, to finally cut this novel to its end, after finding the right neurologist, we found the correct medication that is sustaining me. I can bathe, dress, draw, and watch television on my own! Not only, I completed a 30 mile bike ride in Davis for their Foxy’s Fall Ride event. I won’t lie, it was hard. However, with the help of one of my best friends, we took our time and she encouraged me through to achieve my goal to the finish line. Allyson, you will never know how grateful I am for you being there for me on that day.

With my wonderful friends, parents, and amazing husband, I am here now. Currently in a remission from MG, with medication and just starting to find my way through the maze of depression. I’ve begun therapy and belong to a support group, thanks to my other amazing friend, Kris.

While I have had the depression much longer than MG, I am just now realizing I need therapy, along with my medication to truly navigate this journey. I’m lucky to be surrounded by good people who support and love me. I’ll never be able to repay the kindness I’ve been shown.

Thank you for reading my story. It didn’t seem like I had much to say until I started typing and could not stop!

Katie

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