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How do you get diagnosis when you keep getting turned down from doctors?

So I'm new to this whole thing. And this site, to which im entirely grateful for. I am extremely frustrated, and I don't know what to do now, and i need some non medical advise. I was denied an appointment with the mayo clinic. i had sent them a photo of my face so they could see my eye, and all of my labs. Since its negative im pretty sure thats why they denied me. However, my two neurologists i've seen have started to gaslight me, where they think i have it but they don't want to treat it, and want me to go somewhere else. They are super short with me and i think they think i'm making all if it up, which i'm not. I cant clean my house, I cant wash my own hair, I just get too tired to do any of it. It's a fight to even get out of bed at this point. I am trying hard to be aggressive about this, but I don't know what sort of tests to ask for. Or where to go at this point. I am trying to get into a third neurologist whose a woman, who may actually take me seriously, but again she's scheduling out till april. My second opinion dr bumped up my mestinon dosage instead of lowering it, but on the dose i was on i was having major body tremors and i had to stop taking it, but i was having a positive response to it minus the tremors. i could tell when it was wearing off, and when it would kick in i could tell. it wasnt instant relief, but it worked within an hour or so. Im just lost at this point. I dont know where to go, or what to ask for. im getting another appointment with my primary to try and help me get into the clinic here, but im afraid they'll deny me to, and i am miserable and absolutely desperate for help at this point. Im willing to go out of state for treatment at this point, if i could get in anywhere. Because its not showing in my labs, its a problem. and making it difficult. Ive been calling my neuro opthomologist every week trying to stress the fact that im having issues opening my right eye in the mornings, and its still not "urgent" enough to get in sooner. Im sorry for the rant. I just don't know what to do, I was counting on Mayo for answers and its just not going to happen. I need answers, i need some kind of pain management, and I cant get the two people that are supposed to help me to do anything without fighting them for it. Its exhausting. What do I do now?

  1. It is extremely important to be your own advocate! If you know something is wrong do not take the answers that will not help you. It is hard for women to finally be heard sometimes in the medical field. Keep searching for your right physician. They will come along. DO NOT GIVE UP HOPE! Sometimes at the end of the day hope is all we have and keeps us going. Sending you the best wishes and luck on your journey!
    -Shelbie (Team member)

    1. Patience and Pray are the keys for me while waiting for appointments. Oh I get upset and cry often too -- but am learning to pivot. Long waits and no answers are Soooo ooooooo frustrating!!!

      When I am waiting, I do everything in my power to fight for functionality and get I plenty rest.

      These are the things that help me. Hope they can help you too:

      Stay as cool as possible. Take cool bathes and showers and eat frozen fruit pop bars, grapes, shakeS, smoothies etc etc etc

      Exercise - even if all you can do is gentle stretching and chair exercises (leave out upper body for now)

      Meditate 🧘‍♀️ : breathe and focus on your body healing itself. Picture your nerves connecting to your muscles, your muscles contracting, your cells attacking and zapping your bad antibodies. I breathe healing in and breathe out with all of the dead zapped bad antibodies.

      Eat and drink cold drinks, popsicle's, shakes and smoothies.

      When my MG flares - I stick to eating frozen fruit bars, frozen grapes, nutritional shakes, and fruity smoothies. So relieves symptoms and pain.

      Get a good blender or vita mixer. Smoothies and shakes with a ton of ice does an MG body good!

      Because I avoid foods that I am allergic and sensitive to - I mix my own shake and smoothy ingredients (anyone can now get blood tests that identify foods that you should specifically avoid).

      Here is My Recipe for my morning nutritional shake! TiP: I pre-mix mine 2 weeks at a time-- even if i have to do it in bed -- i do it the same day that I need to change my bed sheets).

      OK -- so, I Grab 15 zip lock sandwiche bags, all of the ingredients, measuring spoons and

      1 scoop of organic Cacoa powder in each bag.

      1 huge scoop of organic powdered peanut butter in each bag.

      1 teaspoon of organic matcha tea (for energy) in each bag ... lols all the rest in each bag one at a time ----

      1 teaspoon of horny goat weed -(I also have the anti-Mylenation protein. This herb is the only known thing that remylenates stripped nerves).

      1 scoop of an organic collagen booster (made from Whey Protein, not bovine).

      1 teaspoon of Magnesium powder and 1 teaspoon tumeric. 1 anise star. (both of these reduce inflammation and help with pain).

      1 tablespoon of local honey (for taste and allergies)

      1 teaspoon of fresh ginger (reduces inflammation).

      Then, I Store mixed bags close to blender. So,
      Add a few pinches each of your available homegrown herbs (basil, rosemary, oregano, cilantro, thyme, and chamomile, etc.).

      Add 1/2 to 1 cup of cashew milk.

      Add as much ice as possible. Note that Ice gives

      Good luck! Hang in there! Lean on God. Pray. And Fight for functionality!

      1. Oh noooo long journey! Have you checked out MGFA on youtube???? Soooo much great information from doctors scientists nureaes etc etc . Hugs and prayers! May you have the knowledge to make the best decesions for your self! It has totally helped me to plan out my energy and choose how to use my spoons wisely! Once they are good --- Im in bed -- lols

      2. - What is the anti-Mylenation protein you take?

    2. I went thru the same thing I had spasm# for 2 yrs but this year I had doublevision Head wad drooping Finally next day went to 4th dr. couldn’t eat I would choke I couldn’t pick up plate then walking was hard . Went to hospital sent me home and did mri since I didn’t have a stroke. Told me to leave! Was admitted to hospital next day had 10 treamentsof plasma aphersis did not help. Went home 16 days later I’m on steroids and mestion it’s been a month but is helping. So sorry you’re going thru this also

      1. Oh dear. How are you feeling now Gaylee? thank you for sharing. i don't feel so alone now.

    3. ,

      I know it is very, very frustrating from personal experience!! I too am Sero-negative & did not respond to the repetitive nerve study or the single fiber emg. Only positive to Mestinon & the ice test for ptosis.

      I actually had to take the Ice into my Dr. appointment and show her what happened. She was able to document that for me. After that she totally knew that I had MG. And has told me so many times!!

      Just to let you know I had a horrible experience at the Mayo clinic. (I know that is not everyone's experience). More gaslight than I had ever seen!! And I was a domestic abuse advocate for 10 years and thought I had seen everything, before that.

      Both my Dr. & my Neurologist were very upset with them also!! Because of the way they treated me. My Neurologist knew I have MG and has fought for me from day 1 of meeting with him, He diagnosed me. (It took me 30 years to find him). He only sent me to the Mayo because they have testing that is not available here. They refused to do any of them, except more blood test & the SFEMG.

      They did agree that I had Seronegative MG but said it was only mild (it's not). And I did not need medications at all. And to just stop taking them, immediately. I am on Mestinon 60 mg every 2 hours, 1000 mg cellcept. Also, at the time 30 mg of prednisone (now down to 5mg, cellcept kicked in). And not to see my neurologist but come and see them instead. I am telling you this to let you it could have been a good thing they are not seeing you!! And not just to see it as a bad thing!! I know it's exhausting, don't give up!! There is a Neurologist out there that will be able to help you!

      How long until you get to see your neuro-ophthalmologist?

      With all the caring in the world for you!!

      Sally ( team member).

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