Myasthenia Gravis

Hi, my name is Martin. I'm here because I've been struggling with treatment-resistant depression and anxiety since childhood, for more than 30 years. I was taking amitriptyline 150 mg daily for 20 years, then had to stop taking it because of its anticholinergic effects on my brain. My short-term memory got real lousy. Now my physician switched me to mirtazapine but it's not working so well and I've had repeated bouts with depression and anxiety. I would like to find out if there are people here who have gone through similar experiences.

#MightyTogether #Depression #Anxiety

After a night out in the summer of 2023, I came home, sat on the floor and cried. My entire left leg felt numb and very weak. This had been happening for weeks, along with random tingling throughout my legs & extreme exhaustion for no reason. Mark sat on the floor, hugged me and said we are going to figure this out together. Little did I know that the next 18 months would be the toughest of my life.
A shit show rollercoaster of doctor's appointments, endless bloodwork, MRI's, EMG needles in my legs & head, multiple neurologists, fighting with insurance, tears & emotions of questioning myself; But I knew something was wrong and it was progressively getting worse.
In June 2024, I was formally diagnosed with Myasthenia Gravis (MG). By then, the disease had progressed to generalized MG. Imagine having weights strapped to your arms, legs, jaw, neck, and diaphragm. Now try to go about your day normally. Every muscle in my body becomes weak with even minor movement, and the only relief comes from rest. Some days, I have trouble walking. Most days, it feels like a 20lb rock is pressing on my chest, making it hard to breathe. I deal with daily muscle spasms, nightly leg pain, and constant exhaustion.
Receiving the diagnosis was one thing. The next hurdle is finding the right drug for each individual. This autoimmune disease effects everyone differently ❄️. Since June, I have been on multiple medications, tried various infusions, took a fun ambulance ride, faced the insurance denials & surprise medical bills, and had a thymectomy. Right now, the only thing keeping me somewhat stable and able to walk in short bursts is steroids, but steroids are also the devil. They come with a whole list of side effects that are hindering me in other ways.
So while I wait for my immune system to (hopefully) readjust itself after the thymectomy—it can take up to a year to see any improvement in symptoms—I’m preparing to try a new drug infusion soon.
There is no cure for MG and it will always be a part of my life. It has changed the way I see the world and my outlook on life. I now recognize that there are people we pass everyday who may be carrying the heavy load of an invisible disease. Don't judge the person who looks "fine", but is taking the elevator up one floor. Don't judge the person who one day is easily walking but uses a collapsible cane the next.
Looking back to where I was in the summer of 2023 and everything I went through in 2024, I see how far I've come. I know 2025 will not be easy either, but I feel closer to finding my "new normal". I will continue to push myself to reclaim my life, and I couldn't do any of this without the support of Mark, my family and my friends. Happy New Year. Love & Light.

Hi Mighty community. It's been a rough couple weeks. I mean, I've been worse, but I have literally been on vacation since Christmas Eve and I have not accomplished anything. Well, Christmas Eve I did attend our family Christmas celebration. This year it was spent at my sister's house in Phoenix, AZ. My husband and I live in Tucson, AZ. My parent's also live in Tucson (less than 3 miles away) but I rarely have them over and I frequently feel guilty about that. Especially since my Mom was diagnosed with dementia a couple years ago. My Dad has taken on full-time caregiving for my Mom, but they're both 76 years old and Dad's hip is giving him trouble (he has surgery lined up for the end of January, 2025.
I honestly just don't have any motivation to clean the house, or go out and enjoy the day.
I honestly just sleep in. Get up no later than 9:00 am to take my medicine (including the first dose of Venlafaxin, which is two 100 MG pills) and feed my two cats.
Then I'll watch TV for a few hours, before going back to bed from about 11:30 am till 1:30 pm. I did make it out of the house with my husband yesterday evening. We went out to dinner, but it wasn't without tears. It's just this overwhelming feeling and low self esteem can hit me from out of nowhere. The rest of my medicine schedule with Venlafaxine is one 100 mg pill at 1:30 pm and the last 100 mg pill at 5:00 pm.

Tonight my husband and I are scheduled to go to a "party" with some of his work friend's. It's an annual get together, but man, I don't want to go tonight.

There's one lady in particular I really don't like. About 5 months ago she pointed out to me (in front of 5 others in this same group) that "Joe (my husband) and I had never hosted the Christmas get together." She literally went around the table and specifically pointed out that all the other people had hosted at one point. "And, since she's mentioning this 5 months in advance, that we should host the party this year."

My husband didn't notice the glaring look this lady was giving me. My husband just agreed with her. Meanwhile, my anxiety was hitting the roof!

In the end, one of the other couples offered to host the party tonight.
But, ugh... the stupid party is tonight.
I'm not that excited about going, but for my husband, I'll go.
I'm not sure how I'm going to handle seeing that lady tonight. I know it will be hard for me to control the expressions on my face when I look at her.

I just need to remember:
I can't control anyone else.
Stay in the moment. Most of what I worry about won't happen.
I'm doing the best I can.
And Biblically, "Stronger is He who is in me than he who is in the world."

If you've read through this entire post, thank you.
It was mostly a needed journaling time for me. But if it can help others, that's great.

I'll "Just keep swimming." through this day and life.

I have been taking Clonazepam 0.5 mg TID for 18 years. My psychiatrist retired and I had to look for another provider. Both nurse practitioners insist that I get off the drug, tapering slowly. This medication was prescribed for my major depression with anxiety disorder post psych hospitalization.
Tapering has not gone well. I am down to 2 tabs daily soon to go down to 1.5 daily.
I was doing fine until the tapering. I am 73, I am looking for quality of life, not quantity. I live in a very social senior living community but I am not happy here. My husband is supportive but is very active in the common. I am lonely, we have no family nearby……all live in other states.
What I need help with is finding a provider who will prescribe the low dose of Clonazepam that I’m on. My social phobia has gotten worse and I spend much of my time in our small apartment with no ambition to exercise, socialize, get outdoors. I need help. The providers are telling me I need to get off Clonazepam because it causes brain shrinkage, Alzheimer’s, and susceptibility to falls. The government us swooping in on benzodiazepines just like they did opiates.
#Anxiety

Does taking only half of my 25 mg Luvox work. Scared of 25 so cutting in half

I'm not talking about the upcoming holidays; although for me are depressing. I'm talking about that nasty sky dandruff! The temperature is only a high of 31 degrees F.
Honest I'm not sure which is in a flare! Fibromyalgia, Musculoskeletal Pain, Arthritis, hEDS or any combination. But I am absolutely miserable! Two days ago is when I pulled myself out of a multi-day deep depression. I had the energy so I tackled my living quarters which I had neglected 4/5 days. Also Scrolling YouTube and enjoying life. Before I knew it, it was like 3 am. Whoops!! Needless to say I didn't get much sleep that night. Last night between coughing (swollen tonsil), having to use the bathroom and sporadic pain of different types and in multiple places, I don't think I got more than 2 hours of sleep. So I am downright tired! I had to walk the 3 minutes to the grocery store (using my rollator walker) to get fruit, a few other items and much needed BC Powder. 3/4 of the way into shopping my back went into full spasm. It was all I could do to finish. I just needed to get my BC Powder and then pay. When I got to where my medicine was I was thinking; CRAP. Cause it was on the bottom shelf. A woman just happened to walk past and I asked her if she would get it for me and explained I can't bend over. She was polite and did so. This store has 6 self checkouts and typically only 1 (2 on busy days) regular registers where an employee rings you up and bags your groceries. I can't use that one because my body won't allow me to wait in the long lines where people have full carts. So I'm bending as little as possible to pick up an item off my walker seat, scan it and then bag it. By the time I'm done with that process I had 3 bags and could barely move. I hung one on each handle and the heaviest in the pocket under the seat. I fixed a quick lunch by tossing (I can't think of what their called) 6 of them into the air fryer. Put away my items and went to take them out. Ate those and some melon,and am laying down and my arms are wanting to resist holding my phone!
However; I know I am blessed. I know I've had worse pain days than this. AND ... I know this pain will eventually subside, I just gotta ride the wave of ... (no words to truly describe how I feel, Natural childbirth hurt less)! Thanx for listening. Oh, my BC Powder stopped my headache, but even the combination of my morning meditation of 6 are Tylenol Arthritis (I take 2) and Ibuprofen 800, the BC and I had taken my Gabapentin 300 MG; nothing stops this pain until it rides its course! Stay strong ya all! After all, that's what we do!! 😉

I saw a psychiatrist , the best I’ve ever had in my 30+ years of Major Depression with Anxiety disorder. He retired 1 year ago, it was difficult but I found a pHD nurse practitioner who continued the same medications for 6 months. Suddenly she decided it wasn’t good for me to be on Clonazepam 0,5 mg tid and Ambien 5 mg hs. I was doing well with some antidepressant adjustments over those 18 years.
She has tapered me off Ambien and I still have insomnia. She has tapered me down to Clonazepam twice a day, with resulting increased social anxiety, a terrible habit of picking the skin off my thumb until I have sores. I am fearful and anxious. Decreased appetite.reclusiveness to my apartment, no interterests…..I used to read, do crafts. Now all I am interested in is my 2 cats, and my Chihuahua. I was an advocate for wolves and animals that couldn speak for themselves, used to foster kittens and volunteer at an animal she,yet. I no longer drive because of decreased vision and lack of spatial awareness. I have no family living in Denver. I am at odds with my entire family because of the election. I live with my husband in a senior living retirement. My husband is very supportive but he is gone most of the day because he is very involved in activities here.
I need to find a psychiatrist who will allow me to stay on Clonazepam and Ambien, plus my Paxil and Wellbutrin….therapuetic medications that help me maintain some sort of normalcy in my depressed state.
I desperately need help. Her suggestion was to make friends, get out more…which I have tried. All of my best friends live in the Midwest or Northwest, including my two children an 3 grandchildren. Help me please.
#Depression #MajorDepression , #AnxietyDisorder
, #fearful ,#reclusuve ,