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Do you have Seronegative MG?
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Thanks! I’ll have to check that out.
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The Myasthenia Gravis Foundation of America is hosting their (virtual this year) annual National Patient Conference this Thursday and Friday, February 10th and 11th. The session about seronegative MG will be on Thursday at 4PM Eastern Standard Time. It’s free to register at Myasthenia Gravis Foundation of America (MGFA)
It will be recorded if you want to watch later. I hope to at least catch the part about seronegative MG.
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Yes, I am seronegative and am very disappointed that more isn’t been done through research and drug approvals for us.
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Hi Jennie , we are working on doing a group zoom call with this Seronegative group. If you would like to join, please private message me and leave me your email and phone number. We would love to have you!
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My path is different from most here. I was diagnosed in 1981 but, after many years, realized that my main symptom of laryngitis actually started in the mid 1970s. I had cancer treatments in 1977 and once I recovered, I was stronger than I had ever been until an unrelated, outpatient surgery in early 1981 brought it back. I’m lucky – my diagnosis only took a visit to an ENT who referred me to a neurologist. Until 2008, I had good years with minimal issues and I always limited my activity to accommodate. Then menopause, HRT and aging brought it back with a vengeance. Prednisone makes my MG worse, like many others. I’ve tried IVIg (aseptic meningitis every time), PLEX (minimal success), Imuran, Prograf, and Cellcept (all had different but dangerous side effects), and now I’m on 4th year of Rituxan which has stopped working. Prior to Rituxan, I took 5 60mg Mestinon every 3 hours so on long days I exceeded the maximum of 2000mg per day. Now I take 3 60mg every 3 hours but that doesn’t allow me to walk unassisted but all my stomach can tolerate. In the past year, I have had extremely low O2 with exertion and pulmonologist has me on O2 24/7 with mechanical ventilation at night. However, except for the extreme weakness which is both legs (left is worse), hands, arms, diaphragm and throat, I’m otherwise healthy.
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Hi Jennie. I am not a doctor, but if ever there were a candidate for trying one of the new FcRN inhibitors like Vyvgart, it sounds like you. A few months ago, my dosage of methotrexate was increased to 15mg/week. Since you haven’t tried methotrexate yet, I will let you know if it works. I also had to discontinue Cellcept and Imuran due to side effects. Plex helps me alot, and 10mgs prednisone/day seems to be keeping me stable.
I don’t know how you take so much Mestinon — 120mgs at a time is as high as I can possibly go. I am trying to get by with much less; if it weren’t for the side effects, I would use more.
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Hi, I’m seronegative as well. My diagnosis was relatively easy. My optometrist first suggested MG due to my right eye randomly dropping out of alignment. The neurologist immediately trialed me on mestinon due to the eyes but significant bulbar symptoms and shortness of breath. I had a great response to the mestinon which confirmed the diagnosis for my neurologist. I started having double vision 40 years ago. It was random and mild. 2 years ago I was diagnosed with undifferentiated connective tissue disease. I was already on methotrexate when the symptoms of generalized MG started. The neurologist wants to start cellcept but there has been a delay due to me needing to change rheumatologists. My previous rheumy couldn’t figure out how to work with the neurologist. I just got the go ahead to add cellcept on top of the methotrexate. My other significant symptoms of dysautonomia with gastroparesis and bowel dysmobility have been helped a lot by the mestinon. I take 60mg 3-4 times in the daytime and the 160mg long acting at night. I’m working remotely due to the threat of Covid and the difficulty with driving and double vision. I have more energy working remotely. The effort required to get to work was making me much worse. I’m hopeful the cellcept is going to help. The muscle weakness is getting worse.
I would love to try to connect via Zoom or other methods.
It’s nice see that we aren’t alone in this MG world!
Does anyone else have a connective tissue disease with your MG? Or a relative with MG? My aunt has MG and lupus. I’m sure family history played a part in getting my diagnosis so easily. I just wish I could find a rheumatologist as awesome as my neurologist! My fingers are crossed that this most recent one is the last one!
Nice to meet all of you!!
Julie
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Julie,
Cyndi DeHoff and I are working to get the group together. If any of you have not already done so and are interested please PM Cyndi or I your emails so we can connect. Hopefully we can get this together by next week and send out emails.
Your story is interesting to me. Mine started about 2012 near as I can put a finger in it. Visually issues. Neuro opthamologist ran achr and musk. Negative. Then a bout with Neuroendocrine cancer 2014. After my surgery I’m guessing the drugs and or trauma released full in MG. More blood tests, went to UCLA to a rheumatologist there. They and UVi ran every antibody know in 2015 all negative except for positive ANA 1:1280 amc centromere antibody. After an accidental discovery that I took prednisone and felt much better they first out me on 10 mg, we weaned back to as low as I felt better on and it was settled in 5 mg. All the while with caution with the concern of scleroderma which pred is contraindicated for. They dismissed me with undifferentiated connective tissue disease. Pretty sure that’s what they call, “ we have no idea disease”.
my daughter was dx’d with it 25 years ago, she began with bilateral drop foot at 27. The. After not positive antibodies she finally had a positive ANA after 5 years at the end of her pregnancy. Dx’d with lupus. It got quite severe and she did a clinical trial which was not put forth fda> 2 years later she was given rituximab which out her lupus in remission. Her muscle problem has moved to her upper body and respiratory. Very severe. She is headed to Mayo in March to investigate further. She actually has never been given SFEMG which astonishes me.
my father was told he had ALS. I now believe he had MG based upon his health path. Now deceased so too,late fo find out.sister had chrohns, RA. So yes un answer to your question as autoimmune runs in families we’ve been hit hard.
i really believe this connection can serve us seronegative well to compare and perhaps take our similarities to the researchers.
Interesting that so far it is all females that have responded.are there any seronegative males out there?
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Wow, Theresa there is a lot going on in your family! Besides my aunt with Lupus and MG, my niece has celiac disease and gets the classic butterfly rash of lupus but not diagnosed with that yet. One of my sisters has had Raynaud’s for years but struggles with mental health issues and has never sought out treatment or to figure out why. My children both have psoriasis. My daughter has raynauds as well. My mother has Achalasia which is an esophageal dysmotility problem that they have decided is autoimmune. So lots of weird random tidbits of autoimmunity with some formal diagnoses.
I’m looking forward to getting to know everyone better! It’s no fun trying to figure out all these symptoms and treatments without hearing how other’s are doing with the same issues.
Julie
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Good Morning, the more I read everyones story the more I realize how similar our stories are. It will be good to get the Seronegative group together. Maybe we can make a difference in actually advancing an FDA approved treatment for us that actually will put us in to remission, not just try to “manage” our symptoms.
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Hi Julie, Glad you are here. I have a diagnosis of mixed connective tissue disease on my chart also. I think it is the diagnosis doctors give you when they have no idea what you have, but you have something. We are the square peg that doesnt fit in their round hole. Amy
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Amy, right on! Me too.
Cyndi and I are working to get that zoom group put together.
I think you sent her your email?
feel free to pm me.
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Hi Amy,
I’m looking forward to connecting with others living with these diseases. And definitely the doctors have been stumped by my symptoms!
Julie
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Hello,
Yes Seronegative diagnosed Sept 2030. -
I don’t have a clue how to private message. Help.
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In the upper right corner click on your profile.
then click messages.
put my name in and it will come to me only.
if you have difficulty just dm me.
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Hi Maureen, if you scroll up to the very top here where it says Myasthenia gravis news you will see a circle with 3 horizontal lines inside in the upper right corner. Hit that circle and it will take you to a menu where you will find the Member line. Hit Member and find my name Cyndi DeHoff and under my name will say private message Hit that box and you can leave you phone number and email info. only I will see it.
We are looking forward to meeting everyone! -
I feel dumb. Did what you said, but still can’t find it. I’m done. I’ll just keep reading these responses as they come through. Thanks.
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Don’t feel dumb…ever.
this site truly is not terribly easy to navigate.
if you would like to call me I would be happy to walk you through it. Feel free to message me.
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Hi Maureen! I wanted to reach out because I see you have run into some issues using our mobile version of the website. I did contact our tech person. Unfortunately, this is a limitation of the platform in which our website was created, and certain features such as “add friend,” “public message,” and “private message” are unavailable from a phone. I apologize for this inconvenience. Is there anything else that I can help you with?
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Thanks Jodi! I was feeling pretty dumb with all the help people were giving me, & I still couldn’t figure it out! I don’t have a computer, just the phone. Thanks again! 😊
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Hi Maureen, you are not dumb. This web forum is clumsy to navigate. I’m having trouble too and I did beta testing of websites for a University for years. The easiest way to private message Cindi would be, to click on her picture right above this message (cindi and her dog “Cindi DeHoff”. You will get a larger picture with 3 boxes, add friend, public message, private message. Click on Private message and send her your phone and email for the zoom group. Hope this helps. Amy
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Amy,
thanks for that input.
it is not easy for sure!
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So good to read all these! I am also seronegative. This is my 3rd year anniversary and I am 72, so you can see I was a “late comer”. Double vision was the prompt that took me to the ER, single fiber EMG the eventual confirmation. Like many of you the past three years have been a journey—mestinon, a constant companion, IVIG an early necessity for a near crisis, and prednisone for more than a year to stabilize. Now I take cellcept and have definitely plateaued to a stable place after a full year and am taking just a baby dose of prednisone. I swim in a warm pool regularly because I also have another autoimmune disease which definitely complicates—ankylosying spondylitis affecting my back and joints. But, I am grateful—with lots and lots of medications to navigate and wonderful new friends with similar disease to guide, life is not only manageable but beautiful. I do have excellent medical care. My own spiritual walk in reading God’s Word is a constant source of strength. Yes, I would love to meet via zoom or however!
Debbie
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Ok,followed what you said, but I do not see the boxes that you mention, friend, public or private message. 🤔
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Hello , new to this site . I am also , seronegative . And now after 6 years , my neuro is doubting her diagnosis . Very disappointing .
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I have had “seronegative” MG since 2007, but only diagnosed in 2011 after 4 years of misery, by an expert in MG, after dealing doctors unable to make a clinical diagnosis, who only rely on the 2 blood tests given at the time. I strongly object to our being labeled with a term, “seronegative” that somehow implies that this isn’t really the disease, because of the laziness of the medical community in their failure to test for the full complement of antibodies that can be present. I was once able to arrange with a university conducting research to test my blood for other antibodies, for free, and the lug nut doctor I was seeing at the time, part of a large university hospital in NYC couldn’t be bothered to arrange the blood draw. We need a more positive label for our rare form of an already rare disease, like “untested for MG” to put the onus back on the medical community. We are excluded routinely from trials and we need a better position and benchmarks for trials.
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I too am seronegative. I went through multiple doctors. I have episodes of dyspnea with normal o2 saturation, as a chem & ICU nurse it was hard to accept it had nothing to do with pulmonary issues. Finally diagnosed at Vanderbilt in Nashville, after years of different doctors. Luckily my primary doc kept pushing me to try more doctors. I live in southern IN so we take the 3 hour trip to Nashville every 2-3 months. I finally am stable on 80 gm of IVIG, Mestinon & Immuran. I am a very determined to stay active & have gradually increased my activity to walking 6 miles a day. It wasn’t easy, but I always told patients if you go to chair you’ll stay there. Good luck everyone, it is so nice to know I’m not the only seronegative or out there. Thanks to everyone for sharing.
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Barbara thanks for the positive post.
love the stay there chair innuendo!
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I am sorry to be so uninformed but what is Seronegative MG and how would I know if I have it. Should I be asking this question to my neurologist? She is very good by the way but I have never heard of some of these variances of MG. I only know I have generalized MG.
Thanks
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Ron-
Seronegative is those of us about 10% who do not test positive to the Achr, MUSK orLRP4 antibodies. So we are diagnosed by single fiber EMG usually and or symptoms relieved by treatment I.e., prednisone, mestinon etc.
See below.
https://www.medscape.com/answers/1171206-92611/what-is-seronegative-myasthenia-gravis-mg
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I am seronegative. It is hard enough to have a rare disease with MG, but adding being seronegative has really discouraged me. I was diagnosed in Feb. 2020 and have had a very rough time all these months with several hospitalizations for MG crisis.
I am so disappointed they withdrew use of new drug for seronegative patients.
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Hi! I do. I would like to be added to the group please. Nice to meet all of you. I tried messaging TheresaG to be added but this is saying private messages are temporarily suspended. I would appreciate the support.
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I am sero-negative and after >30 years (officially ~15 years..the rest of the time it was “all in my head”) my baseline now means I can’t chew much, have chronic respiratory failure due to muscle weakness, extreme heat intolerance, fatigue that great limits any activities after ~3pm ( even after my daiy nap)…I’m extremely mad about the FDA excluding seronegative patients for the new tx
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I was initially diagnosed by a neurologist at my first appt with him after years of symptoms of leg weakness. My eyes were drooping badly by the time I saw him. Serionegative – then had a flare within the month. I had stopped my mj tincture once I got the diagnosis because I couldn’t find any info. The best forum is a facebook group that does not allow discussion of cannabis. I’m back on the mj and glad I live in the state of Maine where it’s all legal.
No cannabis research is truly hurting us.
Mestinon inflamed my stomach badly and I’ve had to quit it. Neuro hopefully next week will do something more. I thought he was starting approval for IVIG but turns out now we have to discuss it.
I was fortunate that I ended up with a great neuro diagnostician. but it wasn’t on purpose. He also does autonomic testing and I have Ehlers-Danlos. POTS is very common for us but I also was sure I didn’t have it. So it was a hail mary and I’m diagnosed after spending years of problems with my legs and fatigue from walking.
And with no treatment. Thanks for all the responses about IVIG and Plex. You haven’t given me some hope.
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