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stephenbaker (@stephenbaker)

Unknown Neurological disorder mimics MG

Brain & Nervous System | Last Active: Mar 11, 2020 | Replies (17)

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@Erinmfs

Hi, I have MG and I'm a trained MGFA Support leader. I am so sorry to hear about your MG-like situation. I too came to have MG by taking an antibiotic (doryx), having a reaction, and ultimately contracting this awful condition.I blame that doryx, but doctors cannot confirm it was the doryx. Yes, MG support group members all have their war story on trying to get a definitive diagnosis. Please see Mayo's neurology team for guidance, they are experts. Do it now, it will save you time and money later and you won't waste your time and $ seeing lower quality neurology practitioners. My MG was definitively diagnosed by a neuro opthamologist Dr Chen (he did a tensilon test) and my eye popped wide open. He smiled and said , " that's MG alright! " , I've also seen Dr Sorenson, Dr Jones, Dr. Ahlskog and had a complete workup to rule out everything else, like multiple sclerosis. I hope it's ok to give my neurologists kudo's like that. I was tested for MuSK several times in several locations, and after 2 years, the test finally came back positive at Mayo, have you had your MuSK antibodies tested, you didn't mention that, although it's possible for the MuSK test to be negative but to respond to Mestinon favorably (that's what happened to me) and that is considered a positive MG test (taking Mestinon, does that help?) kinda thing. MuSK antibody test is so difficult to get a real result on.

There are a few different types of MG, check out http://www.myasthenia.org, I believe I saw the descriptions there, and they have more scientific, research-related information on the different types of MG. I have MuSK ocular myasthenia gravis. Very rare. My ocular MG escalates to a real mess if I exercise strenuously or become overheated.

Unfortunately, the bad news for you is that I've heard similar stories to yours online and in person. You sound like the latest member to MG support. You didn't mention the need for IVIg? I have participated in support groups for http://www.myasthenia.org (the MGFA), and Conquer MG (www.myastheniagravis.org). Yes, even heat, a hot tub can trigger symptoms. I have a terrible time when the thermometer climbs above 90 degrees, hot tub or not. I have never needed IVIg or plasmaphersis, but I've led support groups where the clinicians came and taught us all about those procedures. I don't want either procedure!

My good news for you is that many people go into remission. I would was in remission for several months, and my right eye drooped on me last week 🙁 . Luckily, doctors will tell you that I have ocular MG, and not generalized, and doctors feel it's unlikely that my MG is life threatening, as I've never needed an IVIg.

I recommend eating as many green vegetables as you can, it helps me! I once had ptosis in my eye, and I made some red cabbage cole slaw, and ate many helpings of that. Cleared up my MG symptoms, I went into remission that same week. Eat your vegetables and get plenty of rest. That helps me. I'm into oven roasted brussel sprouts, red cabbage slaw, and kale kale kale.

I hope this helps, feel free to ping me with the @ sign if you want to talk some more.

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Replies to "Hi, I have MG and I'm a trained MGFA Support leader. I am so sorry to..."

Teresa, thank you, thank you, thank you!! I could give you a big tight hug!
This journey is like a ‘war’ and so often, I feel like I am battling against the system! It feels like I have to convince Neurologist that the symptoms I have are real even though often they can see the ptosis for themselves!! Thank goodness that my GP and family are behind me!!
My ACHR was 113 last July. I was advised that I needed to be over 300 to be positive. I don’t understand why the 113 doesn’t count. Lol.
My MuSK was negative last July.
Interesting you stating that a positive response to Mestinon in itself is a positive for MG. Is that just for MuSK or both, MuSK and AcHR?
I am taking lots of time resting, I can’t do anything else otherwise my symptoms catch up with me, and I am useless for anything and just have to go to bed and recoup my energy.
I appreciate the diet advice and will follow for sure. I have been trying to do little walks at times. You have to laugh, that there is a 2.6km walking loop that I do. A lady last week ran past me three times! If you don’t laugh you’d cry hey!
I actually want IVIG as I want to stop this progressing which it continuing to do, but as I don’t fit into any tick box, further therapy is denied to me.