Myasthenia Gravis

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Myasthenia Gravis
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    Community Voices

    Stapes surgery: your thoughts/experience
    #Deafness #autoimmune #MyastheniaGravis #Surgery #ChronicIllness #sjogren ’ssyndrome #POTS

    I have very severe cochlear otosclerosis with severe to profound hearing loss in both ears and multiple autoimmune and chronic conditions. Since I am using hearing aids on both sides but getting little benefit from one of them due to the severity of the loss and difficulty with speech discrimination too, my doctor wants me to undergo a stapedectomy. I’m pretty nervous to undergo this surgery and would love some feedback about pros and cons and any alternatives I may be missing. Thanks!
    #Deafness #autoimmune #MyastheniaGravis #Surgery # chronic illness# sjogren’ssyndrome #POTS #Hearing loss

    4 people are talking about this
    Community Voices

    Gabapentin for sleep and Restless Leg

    I'm on gabapentin to help me sleep and treat my restless leg due to a side effect from another one of my meds.
    It's treating my restless leg fully, it helped me fall asleep really well for about 2-3 weeks, but it did leave me very groggy in the mornings, almost drunk-like.
    The problem is however that my body is already adjusting really quickly, I started on 100mg, I take 200mg now and I'm going up to 300 mg tomorrow as my doctor is allowing me to self-titrate up to 300mg. I could have gone up to 300mg a week ago but I didn't as the 200 was still working but isn't as well for sleep.
    I was wondering if anyone else has noticed Gabapentin adjusts to their body really quickly. #Gabapentin #Sleep #

    Community Voices

    Feeling like a disappointment #Depression #Anxiety

    Hi,I Haven't been on in awhile,I have been working in the same place for four years now as I'm writing this I'm crying I feel like my stress levels are on high my anxiety has skyrocketed my depression is active and stronger than ever I was put on Zoloft 50mg and put on vistaril 50 mg 4x a day as well in May and felt somewhat better but I can't stop thinking I'd be better off dead than feeling like a disappointment to everyone around me if they found out about all of this. I can't sleep and I go to work laugh,smile I keep myself overly busy to the point where everyone tells me I'm doing to much just so I won't think but I feel so fake pretending to be whole when I feel I am not.My husband has said maybe its time to just quit and stay at home since I'm really not getting paid much and we could cut back on some things but I feel like I'd be worthless like I will loose everything even knowing he makes enough to sustain us.So I continue to do it even if I coming home at 2pm to hide in my bedroom til 6am the next day and repeat the cycle.I don't know what to do and it makes me feel worse like I'm just so broken 💔 😔I can't accomplish anything else but this repeat cycle.I am just so tired 😫

    Community Voices

    Twice in the last month, I lost the ability to walk for an entire day because my whole body would start shaking so hard that I couldn’t maintain balance, even with a walker. One time it was after a short amount of exercise which I hadn’t done in a long time and I almost fainted when I stood up and then I lost function. The second time, I had a hemiplegic migraine and took medication for it that I’ve used for a few years and never had any issues with and I had the same shaking standing and attempting to walk was a problem. I regained a little bit of function by bedtime but not much. The next morning, I was ok again. Is this a symptom of POTS? I have been diagnosed with it. Has anyone had this type of experience? #POTS #AutoimmuneAutonomicGanglionopathy #AutoimmuneAutonomicNeuropathy #MyastheniaGravis #ChronicIllness #Dysautonomia #AutonomicDysfunction

    7 people are talking about this
    Community Voices

    Meds? I would love to find a mix that lets me function without feeling like I’m numb.

    I have BPD, depression, anxiety & ADHD. I am currently taking Wellbutrin, which is okay and I tried going off all together (while I was off work, so a safe time to experiment). For the last year I tried Abilify - at first I thought it was a life saver, now I look back at the last year and I question some of my decisions and if I would have made them off Abilify? My Dr. (family Dr.) wants me to try 2.5 mg of Abilify with the Wellbutrin.
    In the past I have also been on Prozac & Topirimate.
    I just want to be able to get through the day and smile, and control my stress level. It will be time to return to work soon so some stability would also be nice.
    I’m also having sleep troubles, that could be a little be to do with age - female in her late 50’s.
    If anyone can share their experiences I would appreciate it. Hopefully I will actually get an appointment with a psychiatrist who can help me with the meds. #BPD , #Anxiety

    5 people are talking about this
    Community Voices

    Journeys With My Chronic Frienemy

    I'm now 65 ... well, in 30 days. I was diagnosed with Myasthenia Gravis at 51, and had already been on Disability for Fibromyalgia for a number of years.

    Do you know that one friend who's more of a "frienemy?" They will always push you to turn loose of your past, and to look forward; they push you to be your best version of you in the "now," because yesterday only matters as a place you learned lessons. Sometimes they try to over-parent you, telling you that you really shouldn't do things that you really want to do; and if you ignore them, they're right there the next day, clicking and shaking their head and saying "I told you so."

    On a bad day, my "frienemy" stands mutely by waiting for me to finish trying to compare the things I could once do on a bad day with the things I can now do on a good day. On a good day, my "frienemy" reminds me that the past isnt where, or who, I am now, and that I'm more resilient than I'd ever dreamed I could be.

    On a bad day, I feel my "frienemy's" eye-rolls as I read off the names of friends and lovers, actual and potential, whether they're lost in fact to MG's presence, or their possibility is avoided because MG won't leave me alone. I think of the career I could have, straining my eyes to see the distant horizons of travel that will not happen.

    On a good day, MG pulls out a chair and says, "Let's talk, girlfriend. Which of those actual friends and lovers, and especially that last ex ... WHOO-WHEE ... was worth even 1/3 of what you poured into the relationship? You know, you'd probably still be with that last one if it wasn't for me!" And I sincerely say thank you, tears of gratitude in my eyes. The relationships past taught me the lessons I needed. The people that really matter are still with me. On a good day, I see more clearly, and realize that those potential relationships I choose not to pursue because of the constant companionship of MG are ones I *choose * to avoid. That's not on MG, that's on me.

    On a good day, I can be objective. I can realize that, though I'd actually really like the career, and really love the travel, my "frienemy " has allowed me the time to explore different avenues more completely. My MG has allowed me the chance to spend more time painting, and has taught me, through necessity, new techniques. And while I no longer have the rush and bustle of airports or long winding foot-rambles through new lanes, byways and thoroughfares, I can go so many more places, experience not only new and exotic locations, but live a multitude of entire lives through books.

    In all, as with most close companionships, there are good times and bad; times when I rage and kick at the stalls, and times when I can sit in peaceful contemplation ... and even in happiness. I know that sounds totally at odds with having a chronic illness, and I wouldn't ask for it, or wish it on someone; but:

    If I live my life each day, each moment ... as a parenthesis in eternity, rather than as a comparison to others (including the "was-me") ... then it's a life that still has joy, still has meaning, and is still worth living. I did not chose Myasthenia as my companion, but it has taught me how to be my own companion, and my own best friend.

    MG has taught me that:

    The purpose of the journey IS the journey, not the destination.

    It's okay to not always be okay, as long as you don't live there.

    Needing help isn't a weakness, asking for help is courageous and accepting help when its offered is a tremendous strength.

    We need to practice the same patience with ourselves that we automatically give to others.

    Learning to let go of the *was* and live in the *is* is the only way to successfully move into not just the inevitable *will be*, but the infinite possibility of *can be*.

    Learning to love ourselves and know ourselves as SO MUCH MORE than the body we inhabit is the pathway to truly loving others, and is the purpose of our existence.

    1 person is talking about this
    Community Voices

    I’m new here!

    Hi, my name is jennysjack68. I'm here because I have Myasthenia Gravis and Sjogrens syndrome and I would love to have other people in my life who are living with chronic illness and understand me and my life. I want to gain strength in numbers.


    1 person is talking about this
    Community Voices

    How or What do you during an MG exasperation to keep your mind busy and your body still.#MG #MyastheniaGravis #ChronicFatigue

    As I lie here in the hospital, slowly working towards recovery from this exasperation, I am creating cards as part of my mindset activities. These cards will be given to the medical staff caring for me!

    What is it you do to remain engaged while recovering from those pesky exasperations!


    1 person is talking about this
    Community Voices

    This is me..:

    <p>This is me..:</p>
    6 people are talking about this
    Community Voices

    Antibody Potpourri Anyone? #MixedConnectiveTissueDiseaseMCTD

    Gracious, 2022 is starting off with a bang. I was diagnosed with Myasthenia Gravis in January after reporting symptoms, and I told my doctors (Neurologist and Rheumatologist) of new symptoms progressing fast. A variety of symptoms that didnt seem related to any one thing but they’re there. After I got the Myasthenia Gravis diagnosis more of the labs came back and holy crap, it’s positive for Smith (Lupus), Ana Titer Pattern and Rheumatoid Arthritis.

    After getting released from the hospital for the second time in 30 days for treatment of difficulty breathing swallowing and leg and arm weakness, my Neurologist and Rheumatologist referred me to a specialist and everyone is waiting on his test they assume he will do after our consultation which will be another 2 months out. As I’m waiting and reporting leg weakness that’s so bad despite the pyridostigme and prednisone I can’t stand or walk for more than 15 minutes tops, they’re telling me to relax. I ask how I’m supposed to get around, be a Mom and go to the zoo, be a wife and do dishes or cook, and they tell me to get someone to help me with it.

    I understand the need for an accurate diagnosis before taking a big medication step like a big immunosuppressant, but am I being unreasonable by asking my Rheumatologist to at least look into the Mixed Connective Tissue Disease possibility in the interim? Because she’s holding off on everything entirely until the specialists nerve conduction test comes back.

    1 person is talking about this