MYASTHENIA GRAVIS: My Diagnosis Story!

[@Snarkapotamus]

It took me 6-months to get into a Neurologist and about 5-minutes for her to make a preliminary diagnosis as gMG. Which, is what it was proved to be via various tests...

[@tracysternburg]

Wow, it’s nice you had someone who took you seriously and who had some knowledge. It took almost 6 years and endless demoralizing and everyone telling me I was depressed. It was the bigger hospital in Denver that has decided I do have MG even tho all my blood tests all came back negative. Waiting for the EMG. Thanks for the info.

[@AudreyGetman]

I'm so sorry that happened to you, that's terrible. I hope it got better for you!

[@lillyrocks2011]

Hi, how are you? I have been without the right diagnosis for years. I recently discovered that there's something called seronegative Myasthenia gravis. Do you have your eyelid/s dropping? I have other autoinmune condition. So it's harder that doctors take you seriously. I'm surprised that in tte USA can happen to be without diagnosis😢. I'm in Mexico and in Germany the few time I was there and with my ex bf whos doctor were telling me that is fibromyalgia. That left me without diagnosis for years and I'm still struggling to get the right diagnosis of my other strange symptoms. 😢

[@tarynmg655]

Fellow MG warrior here! Love it girl!!

[@jamiesavell7501]

I was diagnosed with MG last summer after 11 years of eye ptosis so bad it was/is affecting my vision, but the neurologist who was seeing me gave up on me because 2 meds didnt work. He sent me to have another eye surgery. Ive already had 2 by 2 different surgeons and both surgeons didnt think another eye surgery would help. Luckily, i saw my primary care and he is sending me to another neurologist in Jan. Anyone have any advice for having a doctor not give up on you? That has been story after story for me. Thanks!

[@jennymck7320]

My son is going to the pediatrician this Thursday because I suspect MG and I am terrified, it’s been over a year and a half of trying to get answers for my child. Thanks for sharing your story. ❤️

[@AudreyGetman]

Oh my goodness, best wishes for you and your son, hopefully you can get some answers soon ❤️ It's not an easy disease but it is completely manageable. Sending you so much love ❤️

[@keelybaby17]

Thanks for fighting for your child. Mine didn’t fight for me. I’m 25. My symptoms started at age 7. You are a good mother.

[@cherylcarlson3315]

Your pronunciation was great, organization of material great. I am so glad you got speedy answers. Referring to MGFA is on point as great resource.I was told because double sero neg, MG not possible and had 2 muscle biopsies and total of 3 EMG, last being with single fiber. First was told had inclusion body myositis despite having every one of MG symptoms, then no,then yes, then no...5 yrs!! falling like a bowling pin, blurry vision, difficulty swallowing, trouble breathing when sleeping. Being a nurse I pressed to try Mestinon and my life changed drastically, quickly. Current neuro says can't be MG with a good single fiber. Don't care. Mestinon has been a godsend, am over 60 now so no thymectomy and due to delays in treatment, no longer able to work. Would encourage pretty much anyone to read Chloe Atkins book "My imaginary Illness, a journey into uncertainty and prejudice in medical diagnosis". It helps to know you aren't alone or crazy.

[@AudreyGetman]

Mestinon with a godsend for me too, my symptoms dramatically went downhill to where I put myself on a liquid diet for a week or two because I was having a hard time swallowing. Mestinon helped so much before my actual diagnosis, so I'm glad it's worked for you as well. Keeping you in my thoughts!

[@cherylcarlson3315]

@Pablo Dc So glad you are doing well now. But know this, even if you were properly diagnosed with MG and now are "cured" there are many people who also went into remission,some for a long time, who had a severe MG crisis around surgery, illness or nothing. It is a good thing to keep MG going on you list in case you have surgery, get levaquin and wind up in a mess.

[@wendymcevoy7135]

Hi not sure if you'll get this or not. I'm going to condense my comment because otherwise it's a book. Also a fellow Rn, medically retired. For over half my life I have been collecting autoimmune diseases. I think I'm up to 7. I'm 56 now. It's in my family on my mother's side. Dad had parkinson's and alcohol abuse. Anyway I think it was 2013 and I became very weak and fatigued, worse than usual. Ptosis in left eye at night. Saw Neuro, musk negative. Ice pack test positive. Other autoimmune stuff fluctuated all the time. Put on mestinon, imuran and Prednisone 50mg. Got better. Stayed on that for a while. Can't remember how long but got unable to stand side effects. Did pretty well with MG for awhile. Neuro said I had ocular MG. Don't know why because I had weakness in arms and legs, but ok. Fast forward to now. All my auto stuff wildly flared again. Off the chart ANA. ptosis back and increased arms and legs weakness, like pretty progressive. Extremely stressed out for 2 yrs. Hubs had massive CVA and I'm everything to him me and house. Couldn't get into neurologist so I saw PA. started mestinon 3 a day. Noticed a bit better in ptosis but everyday I felt worse. Weakness, extreme fatigue, hands cramping just doing minor tasks. Felt toxic from mestinon? I stopped it. Not able to get in to Neuro again. Messaged through patient portal. Just started on Prednisone 10 mg yesterday. I do think it helped a tiny bit so far. I asked for repeat labs but waiting for response. I'm getting close to the cut off for thymectomy. I would have it done if recommended. I guess I just wanted to tell my story. Don't really have any people who know crap about this to talk with lol. I think my MG reared it's ugly head from all the stress from last 2 yrs of hell being primary care giver here. My kinda question is if anyone reads this have you had any problems with mestinon if you were off it for awhile then went back on it. It just felt so toxic to me this time around. I feel better without it but I really wanted it to work. Getting neurologist appointment around here is like pulling teeth. Since the problem with the mestinon this time I thought about seeing if maybe we should try a smaller dose and go from there. Thanks if you read this. Have a wonderful day

[@cherylcarlson3315]

@@wendymcevoy7135 you are heard. You are not alone. Wish I were smarter than just a nurse. Hope today has a bright spot for you

[@suesturgis5821]

Thanks for sharing!

[@veravero5715]

Can you please advice where to find a doctor who is good with that MG?

[@AudreyGetman]

Hi! It depends on where you are, but in the United States the Myasthenia Gravis Foundation of America has great resources for finding doctors! I hope this helps! myasthenia.org/Professionals/Finding-MG-Care-Providers

[@veravero5715]

Thank you so much for the reply. Stay well🙏 How are you doing after IVIG?

[@crystalr9633]

can myasthenia gravis cause constant muscle fasciculations and numbness, tingling, pins and needles and vibration sensations?

[@AudreyGetman]

I've heard yes, but everyone experiences it differently, so it would definitely be a conversation to have with your doctor.

[@crystalr9633]

@@AudreyGetman thank you im seeing a new nueroglist today hopefully I can get some answers

[@arijjouini6603]

I’m getting those too .. what did the neurologist told you ?

[@crystalr9633]

@arijjouini6603 I had testing I had an emg and a sfemg that both came back abnormal shows I have evidence of a nuero muscular junction disorder they are/ were thinking myasthenia Gravis but treatments they have tried me on for that I have not responded to and I also have lupus on top of that

[@arijjouini6603]

@@crystalr9633 i also didn't respond to medicines they give me .. i'm on 40mg of prednisone now and i take 5 pills of mestinon and nothing seems to work . What treatment they gave you ?

[@julieberns1474]

Fellow MGer here. You mentioned being AChr postive. Any idea why the first blood test didn’t come back as postive?

[@tylercoates8183]

Sometimes if it’s really early in the disease when they test, it won’t show as positive

[@jenniferzybert2884]

Hey! Curious if you’re planning on uploading your video about your thymectomy?

[@AudreyGetman]

Hi! Yes absolutely! I can film and upload that next, it's definitely on my list. Some stuff happened in my personal life this summer where I had to put my channel on pause, but that's definitely something I want to film and upload 💖

[@amantomar1390]

Hey i am from India 23 year old i male am suffering MG

[@paullira6181]

So how are you doing with MG?

[@BernadetteDevlin-l6w]

I have photis

[@starcorpvncj]

Well presented. I've been 73 yearvold male sufferer force months. Likevyou I had to rell the neurologists what was going on. Cheers