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Seronegative Diagnosis? Please read.
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Hi,
I have been diagnosed seronegative MG in 2015. I have been on several different treatment to include prednisone, mestinon, Imuran and Cellcept. I a currently on prednisone for an exacerbation. I was taken of Imuran during covid due to I am an RN and I was working the covid unit (my wbc were way low). I started out as ocular MG but it has progressed to generalized. I have a great neurologist at the Cleveland Clinic now, who actually listens. I can relate to the frustrations of others as it took years for me to get a diagnosis. -
I am seronegative and am VERY interested in joining your seronegative group. Please keep me on the list.
I am currently on IVIG every week. I have been offered mestinon, but it makes me very nervous and does not seem to work very much. My legs are so weak I spend most of my day in bed…this can’t be good for me.
I am getting very depressed because I can’t do much activity anymore. Does anyone else have weakness in their legs to the point walking is painful and VERY difficult?I would appreciate any feedback.
Sincerely,
Lisa Hall-
I too am seronegative and leg weakness/fatigue is my major, but not only problem. My problem is not strength…I have initial good sitting strength tests, it is leg endurance which is little or none. Also have some swallowing reaction when have flare ups/ more weakness and extremely sensitive to any slight heat (even indoor temp above 72). Been tested 3 times all neg for AChR antibodies. Have had 2 positive (for MG) single needle EMG’s (abnormal with jitter). Eye droop and double vision at onset. On Cellcept, 14 mg Prednisone, Mestinon 4x day. About only help that is it keeps me out of hospital. Was on IVIG every 2 weeks for a year which helped a bit, but developed blood clot (no prior history/risk so doc says IVIG caused) and now can’t have that. That wasn’t silver bullet but did help as am worse since can’t take it. To point where I can bath, dress, and walk a bit around house but nothing that requires any active exertion on feet. Can exercise in a pool for an hour which is heaven. Any slight heat, stress, little bit of exertion, hospital procedure/test, knocks me down big time for days or weeks.
Diagnosed recently with RA ankylosing spondylitis but doc says not very active. Put me on Cosentyx. Had cervical surgery 1.5 yrs ago for spinal compression in neck. Highly regarded surgeon, was successful, no problems with movement or muscle control, just fatigue. Surgeon says no problems now.
Other doc’s say problem is MG. MG doc says problem “all my other issues”. But deal is, my leg fatigue is tied directly to and proportional to things known to aggravate the MG… heat, overdoing it even a wee bit, stress, pain, etc. Feel caught in middle. Like this almost 3 years now… mostly house bound…
Sad thing is my own doc is part of a clinical trial for Vygart on Seronegative patients but won’t put me in it because of “too many other issues” Frustrating because I am otherwise healthy physically and sharp mentally…no heart, cholesterol, ambulatory, no diabetes, blood pressure good… Wasn’t for weakness, at 72 I would be out pushing wheel barrows of dirt in my gardens and hiking in the woods.
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If I were you, I would tell your neuro, that at 72, you don’t have time for a bunch of trial and error treatments. It us exactly what I told mine after 10 years no dx, and at 68, I really did not want other treatments and was waiting for vyvgart to be approved. I did 5 months IVIG, which made me sicker. Symptoms very similar to yours .
If he believes you have SNMG, then why not,and if he does not, then find a new neurologist who does.
I think sometimes if your insurance might cause extra work or a hiccup they don’t want to fight. But if he did trials, then ge should get it. Ask him what you need to do to get it. Partner up with him.
If there is not a contraindication for your other illnesses then I would fight for it.
Good luck.
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Theresa please add me to your seronegative group.
Thank You,
Lisa Hall -
Theresa I am Sero negative and would like to join your group. Cannot figure out how to PM you though
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I was diagnosed one year ago through physical exam,ice pack test and mestinon trial. When my blood result came back negative I was scheduled for an EMG and SFEMG. Before I could have it done, I went into myasthenia crisis and was intubated. At that time everything was thrown in. Unfortunately I was considered refractory. I have had 2 more crisis and multiple exacerbations My doctor says I am in a continuous stage of fluctuation. In other words I am brittle. In the end of December a trial of retuximab was tried and it was finally starting to work, so well that my extremely high prednisone was being titrated down. Unfortunately my body did not take to the decrease so I went into crisis again in May. I just got out of rehab. A little down whenever I hear of all the news about drugs out there that we can’t have and all the research being done with us included but because we are such a small group,we are being excluded. Oh well. Maybe someday our turn will come.
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Hi,
I was diagnosed seronegative about 2 years ago. I’d like to join the group. I look forward to hearing from others, sharing and learning.
I’m on mestinon only with some relief. I was so active pre MG, but now very sedentary. I’m quite limited, but learning to plan and pace myself. I’m hoping somehow to do more physically.
Thank you,
Nancy G -
I’m not comfortable with zoom , but would like to be a part of this group . I’ve been diagnosed seronegative for 6 years . Now the same doctor is questioning her diagnosis . It sounds like peer pressure .
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Please add me to the group. Seronegative for almost 8 yrs.
Leigh K -
I was considered seronegative until a year ago when I asked my neuro for the anti-LRP4 antibodies test and it came back positive. Did y’all have this test done? If not, it would be good to know since it is not commonly tested for and thus it’s a group that is much overlooked (for research) compared to anti-MUSK and anti-AchR.
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I am Seronegative for 2 1/2 years now. Still trying to stabilize. I am on Cellcept and IVig every month for 2 days. My veins are giving infusion nurses trouble, veins blowing up, small in size. They have recommended a port. Any pros or cons to having a port placed in my chest?
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Amy, I am seronegative. My journey started one “STRESSFUL” night back in 2011. On that night I was dealing with a medical emergency with my wife and during that time my stress level was through the roof. After having her taken by ambulance to a hospital only to find out this hospital no longer was dealing with mental breakdowns, I had to fight with them to release her to me so I could take her to difference hospital. This was after fighting with insurance who refused to allow her to be taken to a second hospital on their dime. On the way to the second hospital, I stopped at a drive through to get something to eat, and I remember the feeling that something was wrong with me. Food was falling out of my mouth, and I had difficulty chewing. I got her to the second hospital and got her taken care of. The next morning my son asked me what’s wrong with your face? I went to the hospital and was told I suffered from bell’s palsy.
After that night I had problems chewing, talking, opening my eye, smiling, in general everything on the left side of my face was a problem. They ran tests, put me in speech therapy and physical therapy but nothing seemed to make me better. As time went on the symptoms did get better and only seemed to act up in the late afternoon or early evening. I also noticed that I had problems lifting my legs up to walk or lifting things. Because I was so strong when I went to a doctor’s office my symptoms I felt where dismissed. I spent 7 years telling doctors this. Only after another stressful series of events in 2017 and a move early in 2018 plus a bunch of new doctors, including an eye doctor and two neurologist who all suspected MG. All the blood tests came back negative, but they did a nerve study sample and EMG, and I was finally diagnosed as seronegative MG. Then in November of 2018 I had my first crisis and spent a week in the hospital being treating with plasmapheresis.
I spent the next year or so waiting for my next crisis. This would happen every 6 to 12 weeks. Then somehow my doctor got me on Soliris. With Soliris crisis’s where much further apart like 12 to 20 weeks. In 2020 they put in a fistula and my plasmapheresis could now be scheduled. They started at 12 weeks, but we eventually found 8 weeks seemed to work the best. This gave me back a life. No longer did I have to wait for a crisis and then spend four to five days in the hospital. I now go every 8 weeks for about 4 hours getting recharged.
I have just stated a clinical study call Descartes-08 in which they are going to harvest my t-cells and turn them into fighting t-cells in order to slow down or stop needing immunosuppressive therapies like I currently do. I also found out that back in 2013 they did run MG blood test, but I came back seronegative just like I do today. Nobody told me what this test was or why they did it, but I think the negative result was why I was dismissed even though I had all symptoms. This was the first study or even new drug I found that accepted seronegative patients. I am in the second phase; the first phase I think was only 12 patients but the results where amazing. So that’s my MG seronegative life and yes i would like to be part of your group.
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I don’t have my last blood tes results but I too have ALL the symptoms of MG or maybe Ataxia??? I was put on Mestinon but that didn’t work, someone at the VA said it might have been a Generic My new Neor put me on Pyridostigmine and that has helped me walk better, my eye goes double when I get tired or in stress. Like you all we can do is hope.
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Why do you think ataxia
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Early on a Neurologist and my civilian Doctor said my gate was bad and they said Ataxia. I was also tested for Virtigo but that was not the problem. It’s like being in a test tube and everyone sees something different. Now I have been diognosed w/MG.
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For any seronegative patients here, there is an MGFA seronegative group.
The next meeting will be on 11/18/23 via ZOOM.
You can register at [email protected] to receive further updates.
Hope to see you there.
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Sent an email to that address. I am seronegative with every bloodtest they have done so triple seronegative with the antibody, Musk, and the LRP4. I was told I shouldn’t be having the symptoms I was having because my blood tests were negative. Got a different neurologist who said I needed to be treated before I ended up in the hospital. My ADL score was 15 then. On Vyvgart now and about to start the third cycle.
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Is that working for you? TIA
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This is all new to me. I received a definitive diagnosis 3 weeks ago. I’ve been taking Mestinon since last August. Started Prednisone 3 weeks ago with no response. I am now waiting for Kaiser’s infusion center to call as I am not responding to the meds so far
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Ask for Pyridostigmine, 60mg 3xs a day. You will get some bloating and gas but it works. Take something for the bloating. good luck
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Well….not sure how to PM but am seronegative and interested in the new group.
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It seems crazy that doctors rely on blood tests. For other diseases and conditions, they use logic and observation. My migraines were based mostly on observation and my reporting of what happened to me under certain conditions. My RLS was the same. My cardiac condition is diagnosed based on tests and how I feel. But for MG, they want to use only one test. If it looks like a duck, sounds like a duck, walks like a duck, acts like a duck, it’s a duck. You don’t need a blood test.
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How do I send PM?
Thanks
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Hope this is ok they are meeting on zoom Saturday Nov 18 th at 200 but must contact the leader to get the zoom link
myasthenia.org
Myasthenia Gravis Foundation of America > MG Community > Find MG Support Groups
The largest, leading patient advocacy organization solely dedicated to finding a cure for the rare neuromuscular disease myasthenia gravis (MG) while improving the lives of those living with MG.
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Hi Jessica,
Hover over the person’s name and then cllck – it will take you to the person’s profile and you can send a direct message.
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Hi Theresa,
Please add me to the seronegative group. I have been diagnosed with gMG since December 2021 and it took years to get the diagnosis and multiple doctors to understand what was going on with me. All blood tests came back negative for MG antibodies until a neurologist finally did an EMG and confirmed the gMG diagnosis. We need to be represented and allowed access to all these new meds for seropositive!
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I can’t I can’t you have to contact [email protected] by yourself to get the link
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Thanks Jessica, I sent an email. last night and waiting for a reply.
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I was diagnosed seronegative 31 years ago. Over the years it has gotten worse. I’ve tried IVIG and all the immunosuppressants without much luck. Very interested in hearing what others have found successful.
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Hi Theresa!
Thanks so much for bringing us together! Please count me in. I wasn’t able to send a PM because you aren’t a connection yet, so please include me. I appreciate you!
Pearl
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Just email the support group they meet this Saturday at 200pm
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I’m very grateful for this forum and reading what so many of you are experiencing. It’s very helpful to know what I’m experiencing is valid and I’m not going crazy.
I’m 62 and It’s been 4 years with Seronegative MG. I have undergone treatment with mestinon 60mg/4x day and up until insurance denial in Aug. I was also on IVIG Gamunex 2x month. I was managing well. Insurance denial was due to not being on prednisone and or immunosuppressants first. Physicians review stated only after a failure of that treatment warranted IVIG. My Neurologist won’t put me on those meds because she doubts I truly have MG because I’m seronegative. The Neurologist specializes in MG at a Boston hospital.
Symptoms are ptosis, swallowing difficulty, SOB with any exertion, heat, extreme cold, stress and sunlight are big triggers for fatigue and weakness. Cognitive issues of difficulty focusing and short term memory loss are also an issue.
Throughout the 4 years my neurologist has treated me but refuses to document MG as the diagnosis. She has ptosis as the dx.
The Neurologist recently wrote an article in response to a Cleveland Clinic journal article that states Seronegative MG is over diagnosed. She is putting me into this bucket that all my symptoms are from getting old. This started when I was 58. I’m undergoing repeat bloodwork-negative, CTscan negative for thymus tumor, barium swallow-mild dysphagia, SFEMG scheduled 11/30. Her statement is that if SFEMG is negative “I don’t have MG”. I’m searching for a new Neurologist who believes in Seronegative MG. Problem is I’ve just left my job as a PT and healthcare administrator. I’ve worked in healthcare for over 40 years and I just can’t do this anymore. I need a qualifying diagnosis and someone who believes me for the disability insurance to continue never mind to justify treatment.
I’m looking forward to how this group will work together and excited to learn more from all of you about this disease and treatment options.
Kathleen
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I also have been diagnosed with seronegative MG
Pat
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I would love to join
I am seronegative
Kat Collins
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<font style=”vertical-align: inherit;”><font style=”vertical-align: inherit;”><font style=”vertical-align: inherit;”><font style=”vertical-align: inherit;”>hola,me llamo Andrea,vivo en Buenos Aires y desde el 2021 tengo MG doble sieronegativa. Tomo Mestinon, Mestinon TS, Micofenolato y Meprednisona. A su vez, cada 3 meses me aplico inmunoglobulinas. Mi neuróloga me deja regular el Mestinon. Lamentablemente estoy con licencia médica porque no puedo trabajar,soy profesora y tengo muchas horas de clase. Ojalá que se renueven los tratamientos para poder estar mejor. Les mando saludos y esperemos mejorar día a día!</font></font></font></font>
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