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First Signs of MG
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I fractured my ankle requiring surgery and was off work for 3 months. At the end of the third day after I returned to my very stressful, high-pressure job, I started sneezing and had profuse nasal discharge. My left eyelid felt unusual and when I looked in a mirror, it was drooping. The sneezing and runny nose stopped after an hour. Later that night I noticed double vision whenever I looked upwards. I saw my optometrist the next day who said my vision was fine but suspected it might be myasthenia gravis and he told me to see my doctor. I was diagnosed with generalized MG by a neurologist 4 weeks later. The sneezing and profuse nasal discharge episodes occasionally recur whenever I’m really stressed or very tired.
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I wish I could find studies that better describe the link between MG and stress. It seems like our bodies think they should do something in response to a stress. It’s just that they have learned, and latched onto, the wrong something.
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Hi all, I just want to take a moment and thank everyone for sharing their MG stories. These stories really do prove that we are all “Snowflakes” … all of our stories are different, but similar in many ways.
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My first signs of Myasthenia Gravis happened as I was on a week long road trip. I was extremely tired and as we came over a hill, I saw 2 trucks coming at us. With double vision, we all know if you close one eye and everything becomes one. My friend, who was driving, assured me that there was only one. I went to my ophthalmologist/neurologist, and she was teaching a student. She told the student that I had Myasthenia Gravis even before she told me. I had never heard of MG, and turned to the doctor and said WHAT. That started my journey to learn as much as possible about MG. I was diagnosed in 1988. In 1989, I was in Houston getting my thymus gland removed. No other doctors in the Austin area would perform the surgery. They referred me to Dr. Bernard Patton in Houston. He ordered the thymectomy, and I have slowly gotten much better. I was on IVIG for many years. I am no longer on any medication for this misunderstood disease. If I pace myself and don’t get too fatigued, I feel pretty normal.
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THank you Debbie Butler
You made me laugh and smile..your message was a hug
…my left eye is closed since it’s after 7pm..I’m so glad I signed on
I wish you the best
Sincerely,
michele
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I don’t get on here very often, but I need to get on more. I like reading all the stories of what each of us are going through. Some are very different, but some are very much the same.
I haven’t had any problems with my eyelids closing, but I still do get double vision every now and then, but nothing I can’t live with. I go sit on the couch and close my eyes for about 15 minutes and the double vision goes away.
Best to you!
Debbie
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This is my first text. I attributed the tiredness to getting older. I was 80 when looking back,I couldn’t blow out birthday candles. When doing yard work I had to rest every 15 minutes or so. Than would make myself get up and work at it some more.
Than I started losing my voice. Tried to attribute it to allergies or something else.My daughter was visiting and commented on how often I sighed.
She insisted we go to a Dr. Who said it was my heart. All test were negative.
After an extremely bad day. Called my GP was told to go to emergency room. I had lost my voice completely. Had to use a white board to let people know what I wanted. After two weeks and many tests. They gave me Mestinon. After maybe 35 minutes or so.
I was able to talk. Voice was normal. Only lasted awhile, but than they gave me IVIG therapy. Which did wonders.But I’m Seronegative. So I find I’m meant with skepticism from several Drs I’ve seen. My original neurologist, who was wonderful retired.
Been trying to find one since that doesn’t suggest it might be in my head. The one I’m seeing now also is a practicing psychiatrist. He finds every chance to say maybe you don’t have MG. I still have IVIG every three weeks. On prednisone 10mg, Mycophenolate 750mg twice a day,mestinon 60mg prn. Discounts SBC, as I indication of how you are doing.I guessed I have rambled enough.
Was diagnosed in 2017. Im 86 now.
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For a good while, I thought that I was having severe allergy reactions. My eyelids drooped so bad that I could not see. I had surgery to attach my eyelid to my frontalis muscle. It really helped.
Then my legs became week. I have double vision up close, but I can see at a distance. I have had so many neurologists. I am seronegative, but my current neurologist is convinced that MG is what I have.
The pandemic saved my job because we all started teleworking. I can be very successful at work if I am allowed to work from home.
MG sucks.
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Four years ago I went to the DMV and couldn’t smile for the photo…the snarl is what I got. Oh well, it’s the DMV I thought. Four months later on a trip with a friend my speech started slurring at the end of each day. Was fine when I got home because I was not working so not talking much. Then I went to visit my sister a month later and with talking more had more slurring. One night I was slurring so much I went to the ER to rule out a stroke. They sent info to my MD and I had appt as soon as I got home. I’d taken video of my slurring and when she saw that she said “Myesthenia?? and called neurology to see what labs to order. Came back positive so was glad to have a diagnosis. Was on Mestinon 4x/day for 3 years. Last spring after a difficult and stressful move to new home went to the ER with shortness of breath. Was hospitalized and put on BIPAP for 2 weeks; had IVIG which did nothing, then plasma pheresis which allowed me to be discharged after another week. Returned to ER 5 days later unable to swallow; another 2 wks with PP; ;then home for 10 days and back in for another PP course, followed by IVIG. 48 days total hospital days over 2 months. But I did not lose my mind!
I’m still on 30 mg prednisone, Mestinon 180 at bedtime and 60 3x during the day; and getting IVIG twice/mo. Now 3 months later I am doing quite well. Am able to drive myself to grocery store and get around with a walker; my speech still degrades quickly; I have no smile; but my endurance is improving. Most importantly I am thrilled to have the basics which I’d lost: breathing, swallowing, walking, talking. I have had fantastic medical care at Kaiser and have qualified for financial assistance so care is cost free–an amazing blessing. I’ve become quite content at taking each day as it comes, resting when I need to, and enjoying time at home rather than in the hospital. The crisis time was very scary and I hope I don’t have to go thru that again. But I’ll know more the next time if it does happen.
I’ve been a nurse for over 50 years and know how many people have to struggle so hard to get good care. So gratitude is my attitude. I appreciate this forum and it feels good to get this all out to folks who understand. Best wishes to all of you.
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For me, blurry vision that went from occasionally late in day to double vision within a month. Within that same month, completely lost ability to speak coherently. Dealt with that for another month, bouncing from vision and ENT docs, with zero real effort to figure it out by anyone in my medical “team”, including my primary. Then the breathing issues started and I ended up in an ER in Northern Michigan. I suggested MG and also the AChR Blocking/Binding blood test, which I’d found myself online. He actually listened, consulted with a neurologist at 3:00 AM, and ordered up the tests. Since the tests take a few weeks (at least in upper Michigan), he started me on prednisone which he said would be both therapeutic and diagnostic. Tests came back conclusive. Standards meds got everything under control for about a year, but speech issues have now returned. We’re tweaking meds, including Vyvgart soon, and also going to have thymus removed. I went to MG specialist and her team takes out thymus, healthy or not, as SOP for anyone under 60 or anyone really healthy over 60. She also ordered sleep study and said getting on a BIPAP machine was her #1 priority, even above the meds. Fingers crossed. I actually feel blessed, based on symptoms and my new phd from Google, this could have been much worse than MG.
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I am obviously in the minority since my time period from symptom to diagnosis was 24 hours. I experienced double vision and went to my primary. He immediately sent me to an optometrist who was sure it was MG before any testing was done. Same day it was off to neurologist, started on Prednisone and Mestinon which helped but did not totally clear things up. Went through months with eye patch and effects of Prednisone, mostly weight gain. Went through some difficulties with chewing and general weakness. Chewing issues cleared up but weakness lives on. Had a couple of crisis issues, in hospital having to be intubated and have gone through IVIG as well as Plasma Exchange, have since dropped both as no real improvement was noted. Finding a good neurologist is the most difficult problem, two had left the area and I went through another due to communication issues. She told me she treats every MG patient with the same regimen even if they are stable. I wasn’t willing to go backwards so that relationship didn’t work. Finding a good neurologist as well as other doctors who understand the disease and take the time to learn about it is crucial. You need to be your own advocate especially when it comes to drug interactions. It’s a long and bumpy road and could have many detours.
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I believe the first sign was extreme fatigue and not being able to walk short distances without resting. The progression became serious when he couldn’t even swallow a capful of water. We later learned that water is the most difficult liquid to swallow. Being unable to swallow food or drink, he was hospitalized in 2019.
The mg crises happened while he was confined to the ICU unit. Otherwise there would not have been … After IVig treatments, pyridostigmine and prednisone medications, and a thymectomy, all is better. He is off all meds and treatments as of January 1, 2023!
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My first sign of MG came on very quickly in April 2022. As I was driving home alone from an overnight stay with my cousin, I felt as if my tongue was swelling. My first thought was an allergic reaction but I didn’t know to what. Within 45 minutes, I had a “lump-like feeling” in my throat and my speech was slurring. I had another hour to drive to get home. I drove immediately to MedExpress and by then I could no longer speak or swallow. They were sure it was a stroke and took me by ambulance to our local hospital. I was admitted and they did test after test and confirmed it was not a stroke. I was released the following day and told to see my PCP as soon as possible. I still had some difficulty swallowing, talking, eating.and I was very tired. He sent me to the university hospital about 90 minutes away and I was there for five days. During that time, I was diagnosed with MG. Three days later, I had another crisis and returned to the university hospital for 5 more days. Since then, I am taking Mestinon. Prednisone, and have done IVIG treatments, but now receiving Vyvgart. I’ve learned to pace myself and try not to feel guilty about resting/napping during the day if I need it.
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Reply To: First Signs of MG
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<div class=”wp-editor-tabs”>My first sign of MG was having some breathing issues which weren’t too bad at first and I started losing weight. The breathing go worse as time went by & then the swallowing and speech slurring started.</div>
<div>I first thought it was allergies since it was June when it started. My primary sent me to an ear, and throat specialist who was baffled. He sent me for speech therapy which didn’t work. I asked for a second opinion and that guy said it was paradoxical.</div>
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<div>He had no clue either. When they finally did a swallow test, they referred me to a neurologist who thought it was either ALS or MG.</div>
<div>After waiting a month for the blood test, I got the good news that it was MG & not ALS.</div>
<div>I have been very lucky to have a great doctor and great results from the Rituxan treatments.</div>
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