Seronegative Diagnosis? Please read.

[Sharon]

I have been diagnosed with seronegative mg

Sharom

[Karen]

I have sero-negative gMG and am surviving due to PLEX every other week—I’m really disappointed that the FcRn antibody treatments are only for ACh (+)…. As they are considered “in vivo” PLEX (blocking formation of IgG only instead of removing all antibody types) it should be made available to all patients with MG in whom PLEX shows benefit. While statistical significance was not achieved (likely due to low sample size) a trend of improvement was noted—all the other FcRn antibody drugs in development are excluding seronegative patients from their trials— essentially writing us off…being a rare subgroup within a rare disease drastically reduces our treatment options—this is NOT acceptable. Sorry for the rant PS I had a difficult time establishing an account and waiting to get “verified”—I’m not sure what the totally # of users here is; but at best you can expect ~10% of that # as the max. Based on typical clinical trial enrollment, a more realistic estimate would be around 20% of that 10%— but count me in!—Karen (I do not know how to PM in this platform

[Julie M Roberts, EdD]

Karen, click on profile picture/circle>their profile pull up>click on three dots upper right>send message

[Deanb]

I’m having difficulty navigating this system… likely operator error. My apologies if I’m responding to someone versus a general entry. I’m also zero-negative mg. Recently formally diagnosed, but have had the symptoms for over a year now. I have IVIG infusions every 6 weeks… 5 consecutive days per session. It helps greatly with droopy eyelids and blurry vision and slurred speech. Still not working on double vision or breathing. Yesterday, I had sudden leg weakness while walking. Has anyone else had that? Thank you for having me in your group. Oh… btw, I am a 60 yo male.

[Deleted User]

Good Morning folks, seronegative diagnosis
a daily occurrence.
I’ve been around about 12-13years. I’ve been asmisdiagnosed seronegative up until I changed doctors. I was recommended to a young “know it all” neurologist. Everything I said was wrong. He had to be right.
Our last appointment wasn’t much of anything but it was the end.
I’m with a doctor who listens, as do I. I’ve been a plasmapheresis patient about 31/2 years. It does work for me.
I’ve been wrongly diagnosed at least 6 times. Each time I went home, told my wife and started again.
Let’s keep together

Thank you Theresa

[Deleted User]

Good morning folks,
I’m proud to have coined the Tag Will Doctors ever Learn phrase.
A self advocacy group is a
great idea.
The longer we’re living with our myasthenia diagnosis the more we learn how many mistakes our doctors make.
I’m having a Shiley Port changed this coming Friday.
It seems the port was being flushed once a month and now has a blockage.
I’m partially at fault. I let the nurses clean the area around the port while never flushing it. I was too quiet, not saying anything.
Yes I can definitely use a group.
I was diagnosed seronegative
and after verbally approaching my doctor was apologized to.
With all my time with Myasthenia I do need an advocacy group.
Thanking You

[TheresaG]

Stanley,

we are a definite misunderstood group.

always speak up and ask questions.
be your own advocate and don’t be bullied or intimidated.
it can so easily happen when we just are trying to be respectful and polite.

im a bit of a newbie being diagnosed 10/2020. That said, I’ve been around the block in the medical field with a rare cancer as well. So I learned to get all the answers I could and to know as much as I can if not more than the treating doctor. They often are treating multiple diseases and not a specialist in yours. So you have to be.

See my post I am writing now regarding the forming group.

[Lou Venema]

Having a port blocked is necessarily a reason for replacement. I have had my port for 8 years. I was having blockage problems for a while.

The practice at the VA is to remove the infusion tube, then do a push/pull and then finish the flush using saline. That is followed by a flush with heparin.

Sometimes during a blockage they could use a different medication for an initial flush, letting it soak for 15 minutes. Usually that would clear it up.

What did the treatment center say about the blockage? This is how the notes on my visit are shown:

Port A Cath De-access
Access Site:Right
Blood Return:Yes
Flush: 10ml Normal Saline, 5ml 100 units/ml Heparin per order
Non-coring needle removed: Yes
Dressing: 2X2 and Tape applied
Patient tolerated procedure: well”

I have learned after all these years to speak up, don’t take no for an answer and question everything that I don’t clearly understand.

Good luck on your replacement.

Lou

 

[paul spychalski]

That missed diagnoses happens a lot to all of us. Each Doc knows everything.

[Leslie]

I appear to be seronegative, although I haven’t been tested for MuSK yet. Neurologist thinks that testing wouldn’t be helpful. Just diagnosed last month.

Leslie

[mary-s-browder]

I was negative for Achr and Musk. 5th doctor I saw (first four PCP, Ophthalmologist, Oculoplastic surgeon, Neuro ophthalmologist) all disagreed on whether I had it or not. The ophthalmologist and neuro-ophthalmologist said it was not) The Oculoplastic surgeon said even though those tests were negative he thought I had it. Finally, I did some research and found a neuromuscular specialist. She drew labs and found I was positive for LRP4. Labs took a couple of weeks to get back, but she said she was sure I had it at my initial visit.

[Living]

Mary, I went 16 years without a diagnosis. At one time I had double vision for 18 months. Doctor after doctor said “if I didn’t know better I would say you have Myasthenia Gravis, but you have been tested for that and you don’t.” Well…finally after several PCMs and sitting in my 5th neurologist’s office, I heard…”why haven’t you ever been tested for MuSK positive MG.” Well I didn’t even know there was another test. I trusted my doctors. I tested as positive for MuSK. I was told that a “20” would be a positive result and I tested at “640”. Please insist on getting the MuSK test. The treatments for ACH MG are not all effective for MuSK. At the time I tested positive I was referred to Dr, Levin at Cleveland Clinic’s Myasthenia Gravis clinic. I was taking mestinon and the dosage had been increased several times to no avail. He said MuSK will never respond well to mestinon or any of that type of med. He also said that at that time, 2018, the only “disease altering” treatment for MuSK was Rituxan infusions and he prescribed them. My neurologist then followed Dr. Levin’s instructions and I was able to get the infusions in my hometown instead of traveling for all of them. After the first infusions the double vision cleared. After 2 years of infusions every six month (2 infusions given 2 weeks apart). I was nearly symptom free; maybe not quite remission but minimal manifestations. I now have had no infusions for nearly 3 years and am still mostly free of symptoms. I do get tired more than other people; I get a rare blast of double vision if I try to keep reading at 2:30 am; I have a bit of weakness in my neck and thighs. But I am doing so well.

If I had not been tested doctors may have just said well it is seronegative MG and continued to treat me as a patient with ACH+ MG. I do not think it would be a waste for you to get that test and if he keeps saying that you need another neurologist. My disease began with just bulbar symptoms, drooping eyes, double vision, lopsided smile, etc. By the time I was diagnosed it had converted to generalized MG. I wonder if that would have happened if I had been properly treated sooner. I know there are new treatments that are for MuSK and ACH+ patients and I guess your doctor feels one of those will work for you so no reason for the test but I still think you need to know.

Sorry to be so long-winded. I just care.

[Annemarie P]

I am seronegative.

71, diagnosed 1 year ago, not much luck with therapy

[Sheila]

I am very interested in joining a Zoom group about seronegative MG.
How do I PM you?

[Julie M Roberts, EdD]

click on profile picture/circle>their profile pull up>click on three dots upper right>send message

[Cindy]

I’m seronegative too and would love to join. I’m really cotton headed from an exacerbation and/or fibromyalgia. I can’t figure out how to message you.

thanks,

cindy

 

[Sharon]

I have been diagnosed seronegative am 72
Would like to join group but do not know how to PM SOMEONE
Please advise

Sharon

[TheresaG]

I ours like to let everyone who is seronegative know there is a seronegative FB page that is very informative.

Also please look at MGFA site for info under groups to find there is a seronegative group forming there.

https://myasthenia.org/Events/mgfa-national-patient-conference-2022

If anyone wants to reach out to me, you can dm me. If I can help direct you for information.
Theresa

[Susann]

I am seronegative which my neurologist said is the hardest to treat. I am a doctor and did research on my own it is the most severe type and hard to treat I’m on high dose mestinon and IVIG for years. I have failed all immune suppressants including four years of Rituxan off label from 2015-2019. I  stage IVb. I’m on oxygen and have a non invasive ventilator and cannot be in the heat or the sun at all.  They are studying more seronegative pts to try to get approval for Vyvgart for seronegatives

[Willem]

My neurologist classified my MG as — Class lla seronegative for Anti-AChR Ab —

I do not quite understand what this means and do not know my prognosis for the future. I am 77 going 78 and only take 2 x 60mg Mestinon per day, as the side effects on my bowl/bladder with a third tablet is very disruptive. I have my good days and very few bad days at the moment. When my muscles ache on a day I stick it out until the evening, then only I take an anti-inflamatory before going to bed so that I can fall asleep.

[Deb Couraud]

I am Seronegative Disease.

Briefly it took almost 3 years of going from Neurologist to Neurologist after my Thymoma was found and Thymectomy to get a diagnosis.

I was not believed told nothing wrong go back to work. I was treated for anxiety, depression, etc It was a resident of one of the not so nice Neurologist  that said “I think you have Myasthenia Gravis.” I finally thought I had an answer.

I finally got an appointment at Texas Medical Center Methodist with a Neurologist and within 5 minutes of talking to him and an exam he said you have Myasthenia Gravis . Its been good just knowing. I had a host of treatments Plasmapheresis, IVIG,  Imuran, Mestinon, Prednisone, Rituxan. I thank God everyday for Methodist and their Neurology department. I have my life back and have learned how to manage my disease and limitations.

With Rituxan every 6 months , IVIG every 3 weeks , Mestinon, I finally have my Prednisone from 60mg a day down to 10mg every other day. IVIG will be tapered next. My symptoms are minimal with no muscle weakness swallowing difficulty double vision is gone as well. If very  tired or temperate hot have mild ptosis.

Advocate for yourself, do not accept mediocre care, or a physician who isn’t interested in caring for you. My physician is not just brillant, kind,he’s genuine and an amazing human being.
I thank God every day for Dr. Nakawah.

 

 

[Barbara E.]

After a total remission of gMG (no symptoms nor medication) that lasted for 13 years, my doctor confirmed it’s return in 2021. But, unlike my previous round, it turns out that I’m seronegative!

So it’s been disappointing to find that none of the newly FDA approved medication is for us! I assume that our rarity might make studies difficult. I hope they don’t continue to overlook us!

[Barbara E.]

After a total remission of gMG (no symptoms nor medication) that lasted for 13 years, my doctor confirmed it’s return in 2021. But, unlike my previous round, it turns out that I’m seronegative!

So it’s been disappointing to find that none of the newly FDA approved medication is for us! I assume that our rarity might make studies difficult. I hope they don’t continue to overlook us!

[Catherine Mahler]

Hi, I’m Catherine and would love to be a part of this group. I was diagnosed with MG 5/20, even though I was found to be Seronegative. After a short while , my neurologist had me take a different blood test, the results of which could only be sent to Athena Labs. It showed I was positive for RyR or Ryanodine Receptor, something that no one knows anything about. At present I am on Mestinon and immunotherapy infusions every 28 days (Octagam). This is my second go round with IVIG; the first stopped working for me after 1 1/2 years. My Neurologist recently told me that all treatments out there, including what I’m on, are tailored for Seropositive MG patients and there is nothing specifically for us. It’s not very reassuring to know we aren’t being specifically treated.  Its  a case of try this…. If it doesn’t work we can try this, etc. Is there no one out there that knows something about our form of this disease???!!!

[AnneL]

That’s very interesting that your Neurologist would test for esoteric antibodies.  I’ve never heard of that one.  Can you block out personal info, but post your test results?  What other antibodies were you tested for by Athena Labs?

[TaylorZimmet]

Hi, I’m also seronegative. I was diagnosed in January of 2022, so all of this is fairly new to me.

I hope everyone is doing well today 🙂

[Cyndi DeHoff]

Hi Teresa , I want to be a part of the SEronegative zoom group please. You should have my email already. Text me if you need it again. I tried to DM but it said they were temporarily suspended

[Maureen Gosz]

I was diagnosed with MG going on 3 years in August. Also seronegative. My neurologist put me on azathioprine, Mestinon, prednisone, and hyoscyamine, which helps immensely with stomach problems. He told me that I’m the best judge of how my body feels, and let me adjust the Mestinon myself. This worked out great. He really listened, and even had a colleague do the EMG test on himself, because he wanted to know how it feels! What dr does that!?
Well, he left, to go to Chicago. So, I am seeing the other neurologist that is in the office. Needless to say, no comparison. He is totally old school, and almost ripped my head off when he seen the other dr was letting me regulate my own meds.
“NO PATIENT SHOULD REGULATE THEIR OWN MEDICATIONS”.
Everything he says, he knocks down my old dr. He even told me he doesn’t think I have MG! He is cutting the meds I’m on. Then he asks me how I’m doing? How do you think I’m doing? I’ve been miserable since seeing you! The pain is so intense almost everyday, and the muscle spasms almost throw me out of bed. After the spasms end, which isn’t anytime soon, my legs are in intense pain. Then I can’t sleep. Great ride on the merry-go-round. So, he recommended I go see a dr at Froedert & The Medical Teaching College. He said that the people they send there, have had really good results. I wanted to say, well yeah, their not seeing you. What that tells me is that you suck. So, I can hardly wait to see a new neuromuscular dr. That will first be in October. I am on a waiting list, but either way, I don’t have to see my OLD dr anymore. Thanks for letting me rant. I hope that everyone gets the help they need, and to be blessed to have dr’s that listen to them.

[Barbara E.]

I hear you, Maureen!

There is nothing more infuriating than having a wonderful doctor that leaves and being passed on to a ego-driven jerk! I’ve gone through that many times over the years.

Congratulations on dumping him and hopefully finding a good doctor who will work in partnership with you! Life is too short to subject yourself to bullies!!

Good luck!!

[AnneL]

Maureen…I’m sorry this is happening to you.  We are all at the mercy of our Neurologists and finding a good one is a challenge.  Why does this new Dr doubt the diagnosis of his previous colleague?  If you are able to, try to be seen at a University Healthcare System.  They generally are well versed in MG diagnosis and the latest treatments.

[Maureen Gosz]

I have no idea why this dr questions everything my other dr did. My other dr was young & up on everything. The dr I’m seeing now is old, & old school. He keeps bringing up the past, of when things were like this, or that medication used to be called this. Really? Do I need to know that? I want here & now.
I am going to the Medical Teaching College of University of Wisconsin Milwaukee.
I have a friend that is a quadriplegic that goes there, and highly recommends it, and knows the dr I am going to see, and says that he is really good. So, I have a wait till October, but I am excited to see someone that is highly knowledgeable. I am 61, and hoping that this will be the last dr. I have to see.
God bless.

[AnneL]

Maureen…good choice with the University based Healthcare System.  Do not hesitate to call the Neurology department and request to be called in case of another patient cancellation.  I’ve done this every couple of weeks until they work me in.  Maybe the department scheduler sensed my desperation?? lol

[Karen]

I’m seronegative..I thought I’d responded to this post earlier but I don’t see it..I’d love to get involved in the zoom meeting.

[AnneL]

Hi, I’m another SeroNegative patient.  Fired 3 Neurologists, even after getting a definitive diagnosis.  I didn’t like their attitudes or felt the treatments were helping me.  Keep searching until you find a professional Neurologist who listens and who cares.

We are special and we’re not getting the attention we deserve with the current research or the drug companies.  I am basically surviving, but want to feel a whole lot better and get some kind of a normal life back.  It’s just not fair.

[Peggy]

I agree with you 100%.

Peggy

[Annemarie P]

I agree!

[prabha muniandy]

how did most get diagnosed as seronegative?

[Peggy]

I am seronegative. Find MG frustrating and overwhelming in the 2 years I have been diagnosed. Running out of treatment possibilities; evidently I am a complicated, but “fascinating case”. It does not help there are no treatments specifically for seronegative.

Peggy

[Annemarie P]

So frustrated as well. After more than a year on Cellcept, still have blurry, double vision, weakness after little activity. Meeting with Neuro team next week, maybe they will come up with another idea. Hoping this is not as good as I’ll get!

[Mary Campbell]

Hi!
I am seronegative and I was diagnosed through single fiber EMG. I am in a Facebook group for Seronegative MG you should join as there are several thousand members on there. I was so thankful to have their support when diagnosed about 6 years ago.

[Barbara Goodheart]

Hi–I’m 78. When I developed double vision about 12 years ago I visited a general neurologist who diagnosed my myasthenia gravis. He referred me to a neurologist at a major university. The new neurologist performed nerve conduction studies to determine my seronegative status. My therapy began with mestinon, when my disease was in the ocular stage, but within a year I developed generalized disease. I’ve had several IVIG sessions, but those were long ago. Mestinon makes me nauseated and sometimes causes me to vomit, so we’ve discontinued it. I’ve been taking only azathioprine (Imuran) 75 mg bid for several years, and my myasthenia is under very good control. At times I have double vision, but when I do I don’t drive. Several times recently I’ve had major surgery, and we always see to it that the anesthesiologist is aware of the myasthenia and knows the appropriate cautions. I’ve always turned down steroids because of the difficulties in discontinuing them once started, and my neurologist has always respected my decision. I feel extremely fortunate to be under his care! I see him every six months (sooner, if needed), lately by Zoom, because of COVID-19, and during my half-hour, a second expert shares the appointment time–often it’s a visiting fellow (a highly qualified neurologist who is studying under my physician), or, occasionally, a resident physician. I am so lucky.

[Gail G]

I am Seronegative & starting with new neurologist to get MG in control. Enjoy reading other post.