Myasthenia Gravis

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    Benzos

    I take about .5 mg a day of Lorazepam. I have taken it for years. I’ve amped It up in the last few months. I never used to lean on it everyday like this. I’ve been on this med for almost 7 years. In the past year my fatigue has gotten horrible. Daytime sleepiness etc. my insomnia is the main reason I take my lorazepam. Is my fatigue likely due to the lorazepam? I’ve been on it for so long it doesn’t make sense it would cause this extreme fatigue all the sudden. I only take half a mg a day and I know some people take a lot more mg of benzodiazepines than that. #MentalHealth #BipolarDisorder #Anxiety #Insomnia #ObsessiveCompulsiveDisorder #ComplexPosttraumaticStressDisorder #Depression

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    Should I get a weight scale? **Opinions welcome**

    Quick facts:
    - I am diagnosed BP2, Anxiety & Panic Disorder, OCD, ADHD, Insomnia for many years
    - I cycle on and off meds every few years. Currently on meds.
    - I have had weight issues my whole life. My weight has a history of extreme fluctuations.
    - I watch what I eat, I don’t always eat healthy, I work out a few times a week, I try to be aware of of the nutrition of what I’m eating, I cut back 95% on alcohol the past 3-4 months.

    Opinions welcome: Should I get a weight scale?

    - I should get a weight scale: so I know how much I way, I can see I’m gaining or losing weight, it could motivate me to lose the last 20 lbs, it can help me adjust my diet and my workouts, better workouts are scientifically proven to be good for my bipolar & anxiety, motivate me to workout consistently and make better food options, help me live longer, be proud of mg body and weight and health.

    - I should NOT get a weight scale: because I will become obsessed, depressed, anxious, and spiral.

    #CheckInWithMe #BipolarDisorder #Anxiety #ADHD #Depression #BodyDysmorphicDisorder #MentalHealth #ObsessiveCompulsiveDisorder

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    Why I know I am Dying

    People have been asking exactly what is going on medically and how I know I am dying… so here goes a bit of an explanation. I am extremely complex, as such no one can say exactly what I will die of or when. Unfortunately, it’s not like cancer where there are many cases that can be drawn from to predict outcomes more easily. I don’t list all my medical conditions, hence the …, but if you want to know more I am an open book.

    Factor 1, endocrine: most of my endocrine system is shut down; I produce few hormones. I don’t make the key ones like Cortisol, testosterone, ACTH, estrogen, etc., this means my body cannot regulate itself. (When an average person experiences physical or emotional stress their body produces more cortisol, mine cannot do this and if cortisol is not produced the body goes in to shut down and eventually coma and death). This puts me at high risk for dying from adrenal crisis. This is most likely what I will pass from.

    Factor 2, genetic: I also have genetic conditions (mitochondrial, Ehler’s Danlos, Carnatine deficiency…). Your mitochondria are the building blocks, so I have bad building blocks to start with. Ehler’s Danlos effects your connective tissue, so basically I am built with bad glue that no longer holds me together and carnitine is your energy, so my body is losing fuel.

    Factor 3: autoimmune conditions (Premature ovarian insufficiency, Raynauds, celiac…). My premature ovarian insufficiency caused my endocrine system to start shutting down and conditions like Raynaud’s and Celiac disease put extra stress on my body causing other conditions to worsen.

    Factor 4: medications; I take over 100 mg of steroids a day and those have caused my liver to stop functioning properly; I have steroid induced myopathy (my muscles are wasting away), they caused my Ehlers Danlos to speed up, which has caused my tendons/joints to break down faster, they have also caused bone issues so I fracture very easily. There are also several other side effects from other medication that I have taken, such as gastrointestinal issues that put a great deal of stress on my body.

    Factor 5: other medical conditions. My bleeding disorder makes it so I bruise/bleed very easily and puts me at risk for internal bleeding. Add to that my Asthma, Mast Cell Activation Disorder (masts cell allergic reactions daily, risk of anaphylaxis…), osteoarthritis (increased pain levels and decreased physical function) and postural orthostatic tachycardia syndrome (This is a condition that impacts my entire body; from digestion, to breathing, to heart rate, to temperature regulation; it is a dysregulation of the entire orthostatic system).

    My body is a spicy disaster. I have been holding myself together through sheer willpower and stubbornness basically. Lol. Those of you that know me, know that for the past almost 5 years, since my diagnosis I have been pushing very hard to find a unifying diagnosis, basically this is a diagnosis that can tie everything together. As far as we can tell, this doesn’t exist. I was just dealt a shitty hand of multiple medical issues that don’t play nicely together. I have managed my conditions by being my own advocate, doing extensive research and setting my life up to be as optimal as possible. Using exercise, diet and any other tool I could to find the optimal functioning for my body. Unfortunately, my body just reached a point where no matter how much medication, good food, daily exercise and positive attitude I have it is just tired and breaking down. Some people have asked how I know I am dying if doctors can’t predict an exact cause or date. First, I must say that gaslighting, questioning what someone knows about their own body and medical conditions is not cool, even when it comes from a place of care and concern. Second, I am a very well educated person who understands medical research very well and uses empirical evidence like scans, bloodwork, X-rays, the visual signs such as twisted bones/bruising, etc. to make decisions and draw conclusions. I listen to my medical professionals and care team. I also draw off of those people in my personal support team and their observations (some of whom have medical training). I do not say I am dying lightly and it is not “giving up”, it is knowing I am at the end and instead of spending that time fighting the inevitable I choose to spend my time finding joy and peace. Life is always more good than bad and I am going to find my bliss to the very end! Much love.

    Chris

    #Abunchofrarediseases
    #AddisonsDisease #PosturalOrthostaticTachycardiaSyndrome #EhlersDanlosSyndrome
    #PTSD #FunctionalNeurologicalDisorder #Migraine
    #Asthma #CeliacDisease #MitochondrialDisease #MastCellActivationDisorder #Trauma
    #RaynaudsPhenomenon #Depression #Anxiety #ChronicPain #ChronicIllness #Disability #DistractMe #dying

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    Incompetent Med Manager. HELP!!! #Panicking #scared #PTSD #BipolarDisorder #Fear #Medication #help #MentalHealth

    I have an appointment with a scary med manager ive seen once...i dont know how to handle this...
    I live with medication resistant depression, bi-polar 2, anxiety and PTSD. Over 30 years I have gone through about 20 medications as well as ECT and Ketamine. Nothing has worked. I am educated on the brain and drugs...because I have to be.

    This is long, please keep reading!!!

    I have to rely on 4 medications, including Klonopin, a benzodiazapine. It is not just for anxiety, it is for bi-polar.
    I have tried 2 new med providers. In 4 months. The first one tried to kill me by prescibing tramadol when i am on an MAOI. I made the first mistake EVER, dang it, taking double klonopin based on her orders instead of looking at bottle. 8 days. I was dealing with Pharmacy and therapist and her lackey. Stupid, but for my system, felt nothing! I called immediately and thought, no big deal, been on this for 10 years!!! She refused to refill AND did not explain it wasn't forever, she would have done next month. But no one called me back after 4 frantic phonecalls!phonecards!!
    I went through withdrawal and my therapist said ER. (I have no idea why she didn't help call Dr again). ER=drug addict.

    I asked for a provider at my hospital and just took next appointment. He's an RN with Psych training(no offense but...) by end of first visit with clear explanation by me, he fully agrees to 1 mg 3xday, my normal dose. Lol, I make him repeat it 3 times!
    Sooo . By now no Klonopin for 2 months and my manic is so bad I almost take my life!
    He gave me 10 days of 1m tid. I assumed a mistake. He didn't refill on time so another 3 days without. Finally get it... .5 mg tid!!!.I am calling daily saying he made a mistake. Took a full week to find out he's titration me off. That @%$,- KNEW he was going to do this at our visit and LIED to me.
    I've tried his supervisor, no response, spoken to another Supervisor who tried to reach her, nope. Made complaint to public relations, another message to MIA Supervisor.

    HELP!!! I have an appointment with him tomorrow and DO NOT want HIM alone! Maybe someone watching would keep him from lying?
    My son will be with me and I will record conversation.

    Sob! I'm terrified that he has control of MY medications and can do whatever he wants! This benzo fear is out of control!!! My last Psych and the 2 before all said " you will HAVE to be on this, don't go off, it is part of a regime that is keeping me alive.
    Also, if a Dr has 2 or 3 clients out of 75 on benzo, the government doesn't care. It's when 25% of your clients are on them becomes a problem.

    I don't know how to behave tomorrow. Luckily for him its telemonitored. Do I grovel, cry, or give him the look that makes children hide and men cry? No matter what, I'm a druggie in their eyes. Why, how, I hate living here.

    If I lose Klonopin again...I won't survive.

    Heidi

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    Something worked for me, please read on

    I had BMS for a good 20+ years. I questioned my general dentist, periodontist, oral surgeon, pcp,
    endocrinologist, and anyone else who I could ask if they knew anything about it.

    I my case, it only affected the left sideof my mouth, lips, tongue and upper palate. Right to the midline. Odd.

    I was told by different medical professionals that it was psychological, it was due to a combination of the medications that I was on, it was food intolerances and more. I tried " miracle mouthwash" and .05 mg clonazepam 3 x day. No change.

    I eliminated different foods and food groups for weeks at a time. Nothing.

    Sometimes wearing my bite guard during the day would lessen it, but only a bit.

    As I was in the process of getting diagnosed for a genetic disease, I had reason to see Neuromuscular Speciaist/Neurologist/Psychiatrist (all one physician) at Mass General in Boston. Along with being diagnosed with Mitochondrial disease (muscle biopsy then Genetic testing) I was also diagnosed with small fiber neuropathy (skin biopsy) and autonomic dysfunction (lots of tests).

    I figured that this is the person who can help me with BMS! He discusses things with colleagues at Mass General and other Boston hospitals. He trialed me on Gabapentin and Lyrica but they really affect my mood. Trialed some Parkinsons drugs (off label, I don't have Parkinsons). Finally landed on a drug called Pramipexole (another Parkinsons drug). My pain went from a 10 to a 1 with some time and dosage adjustment, if I have any at all.

    Your mileage may vary. Be well!
    My Neurologist- Dr. Michael Bowley
    Mass General Hospital

    #BMS #SmallFiberNeuropathy #neuromuscular #mouthpain

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    Moving from Lexapro to Zoloft Tw: suicidality mention

    About 4 weeks ago I started Zoloft and stopped taking Lexapro.

    The first three days were horrible. I felt like I did when I had a bad reaction to an antibiotic, and felt suicidal for the first time in years.

    Called and left a message at my psychiatrist's office with no reply.

    I am on a 25 mg dose and have tried taking two, bumping up to 50 and felt *almost* ok, have been toughing it out for the last few weeks.

    Work has been exhausting and I'm afraid. I have not been myself.

    I am hoping that my appointment will see an increase to 50 or 100, since 25 is not helping handle things at all.

    #Zoloft #Sertraline #MajorDepression #TW

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    I’m new here!

    Hi, my name is TaiChiGreg. I'm here because I care for someone with Myasthenia Gravis

    #MightyTogether

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    I’m new here!

    I just recently got diagnosed with hypothyroidism, after going back and forth about it. Thyroid problems run in my family and knew something was up. I had blood work done, and my TSH level was at 4.767 out of the range bar that goes to the highest of 4.780. Last year at this time it was 1.119 (somewhere along those lines). Why did this change in a year ? He said it was fine, I begged to differ. I have known many people with “high normal” results and ended up having to go to a specialist bc even though it was in range, it was still high. I also went back and forth with him about taking synthroid. I knew it was needed. At first he said no, then I had really raise my voice and explain to him how I have every symptom and will not be ignored of it. He gave me the medicine, starting at 25 mg daily. Why do doctor’s question And argue some of the basic things? I almost felt as an inconvenience. What side effects of hypothyroidism do people suffer the most?

    #HypothyroidismUnderactiveThyroidDisease #Doctor #Sleepy #Noenergy Puzzled #