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Seronegative MG

Hello!
I was diagnosed in March 2020. I am a 30 year old female...I'll give you a little backstory..heads up it will be long!

To start- I have never had health concerns in my life.

I went to the local clinic because my left eye was becoming more and more closed and double vision. He immediately recommend I go to the ER because it could be a number of potential problems. I got to the ER at first they thought I was having a stroke, but a Chest CT and Head CT Scan ruled that out. THey found I had a slight left artery tear. They said this was the reason for the droopy eye and double vision. I went to the OR for a stent procedure and they ended up deciding against it and that my body would heal naturally. It eventually did. Days and weeks pass and my eye was going back to normal but the double vision stayed. I went back to the doctor because my speech became difficult. It feels like I can barely move my tongue and it is swollen, even though it appears normal. After labs they determined I had MG because the ice pack test worked on my eye and after rest my tongue goes back to "normal".

After this I was placed on a high dosage of Prednisone(80mg) and tapered twice but I flare right back up. Mestinon has worked on and off without explanation. I have had plasmapheresis and IVIG multiple times.
IVIG always seems to work for about 6 months.

Now I have tried prednisone (still taking 10mg) and imuran.
Imuran didn't work.

Now I am still on Prednisone and trying Cellcept.

Anyone only experience speech issues with their tongue? I haven't had droopy eyes or double visions since this first started. Has anyone had success using CBD Oil or similar? I'm opened minded here.

Thanks!


  1. chelseybcr92, so sorry you are going through this!! How long have you been on Cellcept? It can take a long time (1+) for Cellcept to have full effect. I have had speech issues & tongue issues on and off for years. They can be quit annoying!! While we Can't give medical advice of any kind. But can offer personal experience. As you know there are no sure 1 fit's us all for treatments. Keep in mind that CBD oil/ other medicinal herbs are not legal worldwide/ or All 50 States. Nor is where it is legal.... it is not all the same quality. But I do personally know many people that swear by the use of CBD oil/ other medicinal herbs.... where/or prescribed by Dr. legal for other health issues. Not heard any for Myasthenia Gravis. Best wishes.... Sally Farrier...Myasthenia-Gravis.com

    1. Hi Chelsea! I have had issues with slurred speech. But they tend to improve with rest. None of the treatments really worked for me either. I have not tried CBD oil as a treatment but I did use a cream before just to try to soothe my muscles when I was having spasms. I can't say that worked for me either. But much like the symptoms, what works for every MG-er will differ. I say give it a try if you can find a reputable company. Whatever works for you and your lifestyle. There is no right or wrong way to be ill. Love and light. Morgan (myathenia-gravis.com team member)

      1. Community Rules... #6 Activity cannot offer medical advice of any kind. "But much like the symptoms, what works for every MG-er will differ." (" I say give it a try if you can find a reputable company. Whatever works for you and your lifestyle. There is no right or wrong way to be ill."😉 Sally Farrier...Myasthenia-Gravis.com (team member).

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