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Do you have Seronegative MG?
Hello, I just signed up. Are there any other seronegative MG patients out there?
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90 Replies
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Hello and welcome,
I am seronegative
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Hello Amy! I’m seronegative having a tiny bit of blocking antibodies considered normal. On my 3rd or 4th neurologist who is questioning my MG dx. Finally scheduled for SFEMG next month & she’s wanting me to see a neuromuscular doc who specializes in ALS due to changing symptoms & not really needing mestinon anymore. My speech hasn’t slurred in a while but I’m having more weakness in my forearms & hands. I’m also extremely stiff in extremities mainly & lots of painful spasms.
My MG dx was given by my neuro ophthalmologist due to double vision that eventually resolved after a round of prednisone. Not sure how much that had helped as my medical diary I kept didn’t show much improvement while on it.
Sorry for the long post! Will get the results of SFEMG at my followup with neuromuscular neurologist at the end of April. My journey with this round of medical issues began in 2019 & I’m tired. Just want some answers & praying it’s not ALS! Wishing everyone all the best!!!
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I am seronegative and was diagnosed through a single fiber EMG. I am curious if any seronegative MGers have found a treatment that works. I am currently taking 10mgs prednisone/day, 15mgs of methotrexate/week, lots of pyridostigmine/Mestinon, and Plex every two weeks. I am still symptomatic, especially when the Plex wears off, but hope that recently raising the methotrexate from 10 to 15mg/week will be effective.
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Hi Nan, I am sorry to hear you are still very symtomatic. I was also diagnosed with a positive SFEMG and my response to Mestinon. I think we can learn a lot from each other. I was curious about what treatments were working or not working for Seronegative MG patients. I believe there is something that unites us all, maybe an antibody that has not been identified. I know a little bit about PLEX because my brother had it as part of his treatment protocol for AHUS. There are a number of recent pubmed articles on Plex vs IVIG for MG that I am going to read up on. There is another member receiving IVIG, which I know nothing about other than I can’t have it due to having previous blod clots in my lungs.
Can I ask what your initial presenting symptom was?
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Nan, what is PLEX?
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Hi BBernadette, it is nice to meet you. I am sure you know being seronegative comes with a whole host of problems, from diagnosis to treatment. Even finding a neurologist that believes in Seronegative patients can be a daunting.
Can I ask what your presenting symptom was and what tests were given to help with the diagnosis?
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Yes, being seronegative was a challenge with diagnosis. It took close to 8 years from first mention of MG to an actual presumptive diagnosis and some treatment. Along the way I had the normal antibody tests done including MUSK and some other more obscure ones. Single fiber EMG was read to be negative, though clinically I presented as MG.
Double vision was my first symptom and it still continues to be the biggest issue. I also have had swallowing issues, slurring of speech, and muscle weakness (mostly arms). I was diagnosed on clinical symptoms and a positive Tensilon test. I’ve been on a variety of treatments and am currently taking pyridostigmine, prednisone, cyclosporine and IVIG infusions. The regimen keeps most symptoms at bay.
Amy, are you currently getting treatment? I totally understand that it is difficult to find a neurologist that will manage treatment of a seronegative patient.
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Hi everyone. I too am antiobody negative. I’ve been tested so many ways. It has been difficult to find a neurologist that actually believes me.
BBernatte, your diagnosis sounds a lot like mine. The tesilon test is the only test that had positive result. But clinically I present with MG. (If it looks like a duck and quacks like a duck, it’s a duck.)Double vision was also my first symptom and continues to warn me when my legs are about ready to give out. My legs are my biggest issue. I have trouble swallowing and generalized weakness.I’ve had every test and been on a variety of treatments, prednisone, mestinon, cellcept & IVIG. Currently I take prednisone and mestinon. I had hoped the IVIG would make my symptoms more tolerable, but……..so if anyone is doing something that allows them to get through the day, please share.
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Good Morning Bernadette, I am being treated. I started Mestinon in 2018 and recently started Cellcept. I am antibody negative, but had a positive SFEMG test and initially responded well to Mestinon. I believe my first symptom was also my eyes, double vision. I am hoping to start more discussions with other folks that are Seronegative and what they have discovered. I have already heard from one other Seronegative person that has plex as part of her treatment protocol. I think we can learn a lot from each other.
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Hi ,
I too am seronegative.
I began symptoms 8-10 years prior to dx. Eyes, shortness of breath, fatigue, fatigue, swallowing upper arm fatigue.
I had 4 antibody tests specifically looking for it, by my neuro opthamologist, but as I had just finished cancer surgery, cardiologists, pulmonologists, rheumatologist and others, all attributed it to the cancer. I literally spent 3 years in So. CA running to multiple specialists because I was not me.
finally after a steroid pack used for my back, and all symptoms improved or disappeared, my opthamologist sent me to a neurologist who sent me to get the SFEMG and BINGO!.but as you all note, we still get pushed in a corner of, is it really MG or another muscular or autoimmune condition.
‘fortunately I am now seeing a neurologist who still questions “if’s” but tests my MG symptoms. My husband and I shake our head because I am so textbook symptomatic.
I think they just gave not yet identified the antibody that the 15% of us have. They continue to identify so I’m sure they eventually will.
but it does beg the question, “will we respond the same as an ACHR or MUSK identified” patient.
Currently I take, 3-4 Mestinon/day, IVIG, 2 days every other week, and weaning from 20 mg to current 12 mg prednisone.
i have found the IVIG while immediately was effective, as I weaned the prednisone, the pred rebound greatly impacted the progress of the IVIG. This last infusion was great, and I opted to not drop the prednisone because I wanted to continue to feel relatively normal. I’ll drop another mg right prior to next infusion.
with that un mind, we all must know our bodies, how meds affect them and either have a discussion with our dr.s or if they blow us off, continue to manage our health with their help as best we can.
I am most interested in the Seronegative’s Keeping in touch, through here or another platform so we can assist one another. We are a very small group and do get left out of many of the trials etc.
im sure we are all over the country but if any of you are interested in a zoom or FaceTime monthly get together, please PM me and we can try to organize something.
it might be beneficial, especially if we do respond differently.Out of curiosity, do any of you know how many pairs on your SFEMG were positive? Maybe positive is not the correct verbiage, but I was 2 out of 20 which leaves some gray area in the mine of 1 of my 2 neurologist’s.
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Hi Theresa, my SFEMG test was overwhelmingly positive. The doctor stopped after 18 pairs. All 18 pairr were positive, 2 of them were completely blocked. I am sure that isn’t normal, maybe not even for MG. I live in Mn, but would love to zoom with other Seronegative MG folks. I take 90 mg Mestinon 4 x day plus 2000 mg of Cellcept. I have only been on the cellcept for about 3.5 months, but I don’t think it is working. I would love to hear what others are doing and what has worked. I had to retire from a job that I loved after 30 years because of this disease. I think the 15% is a low estimate of the number of folks that are Seronegative, just by the response I have seen here over the last day. It also confirms my theory that most Seronegative patients have trouble getting the right treatment to control their symptoms.
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Amy,
I agree 15% likely a low estimate, but I also believe it is way underdiagnosed.
As you are in MN, have you gone to Mayo?
They do have the best Neuro dept for rare diseases.
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Amy, I have heard that cellcept can take up to 6 months to work.
it sounds like you have not been out on prednisone which often is given concurrently but if you are doing okay without that is great.
i had been on 5 mg for a couple years because it made my undiagnosed symptoms better.misinformed as I was diagnosed, the neurologist I “was” seeing out me on 2.0 mg. Gained a ton of weight, experienced emotional issues. It is the devil and savior combined. I was misguided on that score and in fairness, it was all telemedicine, height of Covid so not the best way to enter the prednisone war.
For what it is worth, for me, IVIG has been a godsend.
‘I had a response the first infusion. If it were not for the prednisone withdrawal I have a feeling I would be in pretty good shape with IVIG and mestinon. -
Good Morning, I had to stop reading last night. My eyes are terrible in the evening. Currently I am seeing 2 neurologists and a neuro-opthalmologist. I am seeing a doctor at the U of Minnesota Health Centet for my MG. I did have the option of going to Mayo in Rochester. I went there for my Sjogrens and breast cancer. I was much more mobile than and my vision was better. It is a big place. I still may end up going there.
I have had the 3 day iv solu-medrol steroid and a few of the taper packs that help for a few days, but it messes with my diabetes and causes such fluid retention that my doctors hesitate to give steroids to me.
Unfortunately we discussed IVIG, but because I have had multiple blot clots, in my lungs and leg, I cant have it.I am wondering about PLEX. I don’t have many options because of my medical history.
Ironically I felt fantastic during my chemotherapy for my breast cancer. I was on Adriamycin/Cytoxan. I hope somebody will mention a treatment option I can pursue.
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Amy,
Has your provider discussed Rituximab (Rituxan) infusions as an option? I know several people who have been on this treatment and it has helped significantly to control their symptoms. I think the infusion are about every 6 months. Initially this treatment was only for seropositive patients, but my neurologist says that it is now available to seronegative MG patients.
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Hi Bernadette,
My Neurologist just mentioned this as a possibility yesterday. We were discussing Cellcept but the rheumatologist is suspecting possible psoriatic arthritis or a spondyloarthropathy which would be treated with a biologic and I’m already on methotrexate! So the neurologist thought the Rituxan would target more than the Cellcept. She called the Rheumy and she’s good with either treatment. Now she’s talking to someone else about my history of positive TB test in nursing school plus 6 months of treatment 30 years ago. So I may be trying the Rituxan. It would be great to kill two birds with one stone!
Julie
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Hi Julie,
It sounds like you have a lot going on. I hope that you find something that works for you. Please keep us posted.
Best,
K Bernadette
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Yes.
Short version- 3 doctors (1 neuro, 1 neuro muscular specialist, and 1 hospitalist) have told me I have clinical MG and given positive diagnosis based on symptoms. All tests come back negative with EMG showing only slight chance of MG, which 3 specialists have said is so little they are willing to definitely say that I do NOT have MG.
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Hi everyone, I am also seronegative. I was diagnosed with single fiber EMG
my first symptom hit suddenly in the shower which was shortness of breath. Long story short, the first neurologist at University of Michigan immediately thought MG but the blood test was negative and I was passed to neuromuscular and found to have POTS. A year later my eyes wouldn’t stay open while watching TV so I had my daughter video while I did the ice pack test. I sent the video to my neuro, he ordered the emg and I got my diagnosis.
I started on cellcept but switched to cyclosporine which I did well on for 2 years. I chose to stop the drug when Covid hit and I have been doing pretty well. I sometimes get double vision and shortness of breath I do use a daytime Bipap machine for the shortness of breath when needed.
Do any of you have respiratory weakness?
Does anyone happen to live in Michigan?
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Hello I have shortness of breath. It’s a major issue. I don’t have the antibodies and I am wondering if I am seronegative. My doc gave up on me and I’m waiting for my mayo clinic appt.
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I, too, have shortness of breath with any excertion. When I lie down and still continues, I know I’m in trouble.
Don’t you love it when doctors give up on you? Good luck at Mayo!
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Cyndi,
I too have respiratory shortness of breath.
as of now doing pretty good in the IVIG, which in the past 2 weeks has made my SOB mostly on exertion, but for 8 years it has been from speaking for an hour or more, and or upper body usage fatigue.
Or I will be active and about 2-4 p.m. literally fall into bed, SOB and must sleep for 1-2 hours and awake with my energy renewed. It coincides with my legs ready to collapse.Do any of you experience anything similar?
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Cyndi & Theresa –
I also have SOB upon exertion. Do your O2 stat’s drop significantly? Have you seen a pulmonologist or gone to a sleep clinic?
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I also am seronegative. It seems since I’ve been diagnosed in 2020, it seems I’ve been pretty much forgotten in a corner. My dr. told me he was leaving in November. He set up for me to see another dr. in March. So,he always did blood test every month because of the azathioprine. Nothing since November.He would usually adjust the meds,& talk with me, now nothing. My legs are so painful, I can’t talk much, or get excited when I talk, then I start losing my voice & cough. The fatigue is overwhelming at times, I just hope it’s not a day that I am working. I need toothpicks for my eyes, at least cold compresses help. The only thing that seems to help me with the leg pain is Delta 8, and I can only take that at night, because it makes me drowsy, which also helps with the insomnia!
It just seems weird talking about this, because I don’t talk about this disease to anyone. Yes, my family knows, but I don’t go into details, because people don’t really understand how you feel. My husband still keeps telling me to take Tylenol or ibuprofen for the pain. My boss knows also, so if I’m having a bad day I can leave. I always was an upbeat person, but it’s getting harder to be.-
Maureen, I am so sorry. I have trouble with spasticity and leg cramps. I was recently approved for medicinal cannabis in Minnesota. I use a oral liquid that has helped with pain and sleep.
I think all of us Seronegative folks at one time have experienced the feeling we have been shelved by our doctors. If they can’t prove it with a test you don’t have it. I remember almost being in tears telling the doctor, I don’t care what you call it, I just need to feel better. So do something or I need to find someone that will. I had to get out of the mindset that the doctor was always right and remember that I deserved to get the care I needed to feel better. Don’t give up. Amy -
Maureen,
Reading your post brought back memories of all my symptoms prior to diagnosis. My arms and legs ached miserably and the health care providers were stumped on what is was and how to treat.
Hang in there. Is there a primary provider that can order the monitoring labs that you should have done for the azathioprine? At least until you get in to see your new neurologist.
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Maureen, I was on azathioprine for 23 months. After the first few months, my neurologist checked my CBC and liver enzymes less frequently – every 3 months, I think.
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Theresa you sound just like me with the SOB and the afternoon hours needing to collapse into bed!
I would love to start a Zoom or FaceTime group with all of us! Or whatever works for everyone
Maureen I know how you feel about keeping things from people around you because they don’t understand It can be really hard. Feel free to private message me anytime if you want to chat
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Thank you Cyndi!
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I’d be interested in being able to meet up on some forum to help support each other. To be honest, this format is really hard for me to navigate with my double vision.
Also, FYI: the MGFA National Patient Conference is being held virtually next week (2/10 and 2/11). They are having a speaker on 2/10 talk about seronegative MG and how to navigate a diagnosis. It’ll be interesting to hear what they have to say.
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Amy, yes I see a pulmonologist who has a special interest in neuromuscular diseases at university of Michigan. He is great. I qualified for a Bipap ventilator because of the respiratory weakness.
I started with the machine at night but it woke me up every night after about 4 hours. After several weeks of this, I realized I felt worse than when I started. More symptomatic and weaker. I told my doc that sleep is extremely important to help control my MG and the interruption is making the symptoms worse. So I discontinued the use at night and I only use the machine when needed during the day. He was good with that.
I did do a sleep study which showed a 6 so I do use a mouth appliance. I will say I have needed my daytime vent A LOT less since November when I began using the appliance at night.
I have read that MG and respiratory weakness won’t really show up on a sleep apnea test. This lastest sleep test I did was the same result I had before my MG started. -
Thank you ladies for the support. I am one that does what the doctor says, but now I see that you have to be an advocate for your own health. I won’t just sit there and say ok anymore. It’s really hard to find a good doctor. I’m going on my 3rd primary care doctor. I see her at the end of this month.
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Maureen,
ABSOLUTELY you must advocate for yourself. Expecting in the Covid environment, medical treatment is stretched to their limits, silly things like waiting for someone to call. I’ve found that if they say they will call or if the schedule says they can see you for a couple months, call and get to their assistant and see if they will move you up.
I’ve been in this medical circle for too long, I am 68 and I figure I don’t have a lot of potential quality life left to allow the system to dictate.
I don’t have a Zoom account, do any of you? Or are any/ all of you able to FaceTime?
this site is very squirrelly on the eyes. I generally live with 1 eye closed.
Cyndi, my daughter also said sleep apnea not applicable, rather a respiratory O2 test for the muscle weakness.those of you with leg pain, is it just cramps or I have recently experienced achy in lower leg when sleeping, not the normal cramps. and it is quite cold here in AZ, 15 at night, right now.
Curious if any of you have that.‘interesting we are all female so far on this thread. Coincidence?
Feel free to direct message me.
im hapoy to take the bull by the horns, but as I tell all my family and friends, I never know when I can get things done, making commitments difficult as you all surely experience.
‘’one of you mentioned about not sharing with others because they don’t get it.
so true.
I’ve learned it is very hard to walk in someone else’s shoes.
we all live with the feel good this morning and then an hour later, what happened? I have to sleep!
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Maureen, where are you located?
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Amy, Plex (Plasma Exchange) helps me a great deal, especially with swallowing. I have had 116 treatments over the past three and a half years. My neurologist and I hope I can wean from Plex as soon as we find an effective medication regime. For now, every two weeks I go to an outpatient apheresis unit of a local hospital for the treatments. Each treatment takes about two hours — for some people it takes a bit longer. So far, I haven’t had to have a port installed since the nurses have been able to use the veins inside of my elbows. Anyone, please feel free to ask me anything about my Plex experiences.
My first MG symptom was double vision — although I remember being bedridden the previous summer during a heat wave, which was probably an MG symptom. Since I am seronegative, I had just about all the classic MG symptoms for over twenty years before being diagnosed with MG. My SFEMG was stopped early at 16 pairs, 4 of which showed abnormal jitters.
I am thrilled about this thread and about the possibility of meeting other people with seronegative MG via Zoom. Count me in!
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Hi Nan, i just figure out how to get my ipad to read my emails. I too am excited to meet other Seronegative MG folks. I have my first appt with an ENT about my swallowing issues 3/2. I choke on both solids and liquids, not all the time, but frequently enough my family keeps bugging me about it. I also have trouble chewing meat or anything tough unless I cut it up into really small pieces. Do you have any problems with excess phlegm or a runny nose?
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Amy, be careful with an ENT or any other specialist not dealing with MG.
before DX I was 3 days away from an EXPERT university opthamologist doing surgery in my eyes to “fix” the muscles.
thank goodness I was too vain to possibly have sagging eyelids.!!!!
medication can help with the swallowing issues.
i was where all I could eat was soup, protein shakes and baked potatoes.
i was 25 pounds underweight. 5 mg only of prednisone resolved that issue.
i believe IVIG alone would do the same thing.
if any of you are not familiar with the new drug VyVgard, while not approved for seronegative, my neuro will put me on it when I’m ready as it can be used off label, just like other treatments. They just need to know how to process it.
it can always also be appealed on insurance.
it has good results in clinical trials. -
Theresa, Thanks for the heads up. I was hoping to just get a swallowing test to make sure I am not aspirating too much.
I have a healthy skepticism of all doctors.
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Hi Amy. Mestinon makes my nose run.
The swallowing tests aren’t bad at all. The more high-tech one that runs a tiny camera up your nostril into your throat so you can watch yourself swallow was entertaining to me.
Long before I was diagnosed with MG, my swallowing tests revealed that I have oral-pharyngeal dysphagia. Once the ENT or the speech pathologist determines what, if anything, is the problem with your swallow, they can teach you techniques which may improve it. Hopefully the Cellcept will improve your dysphagia. For me, Plex works like magic.
In the meantime, here are some safe swallow tips for when your dysphagia is acting up:
*Take small bites.
*If liquids aren’t a problem, wash down the small bites with a sip of water.
*Try not to talk when you are eating.
*Puree everything. I used my food processor. Although some people can eat potatoes, I couldn’t. Lettuce was also off-limits. My go-to snack food was those little plastic containers of unsweetened applesauce.
* Review how to Heimlich with your loved ones. This made me a little unpopular at family dinners for a while. 😉
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My leg pain isn’t cramps, though occasionally I do get those, it’s intense burning & pain. I can sleep for about 4 hours, with the delta 8, but wake up with the burning again. My legs are pretty much in pain all the time. I’m in Wisconsin, so I was out sweeping our deck from snow yesterday afternoon. Then went & filled up my bird feeders, when I got intense weakness in my arms & legs. I got the shakes so bad, & weak, I’m like, omg, I can’t fall down out here, it’s below zero! I finally made it in the house, & collapsed in my chair. I couldn’t even lift my arms! That was a first for me with the arms. Pretty scary.
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Maureen,
sounds like upper arm fatigue, do you get SOB as well? I get like that then collapse as well. Sleep revives.
I wonder if the cold air in your lungs could also impact what happened.
I always look for the answers.
take care! Stay warm.
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What is SOB?
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Shortness of breath
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The abbreviation “SOB” always brings other things to my mind than “short of breath”
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Maureen, What is Delta8?
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Delta 8 THC is a psychoactive compound found in the cannabis plant. It has a slightly different chemical structure that makes it a lot less potent than true cannabis. It takes pain away, & gives relaxation. I take it in the evenings only. It seems to be the only thing that has worked for me. Daily I take 125mg of azathioprine, 300mg Mestinon, & 30mg of prednisone, for 2 years now, & do not notice any changes, not for the better. It gets pretty tiresome taking these drugs, with no effects whatsoever. I did do the IVIG also, with no results.
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Thanks for the info Maureen. I’m sorry you haven’t been able to find relief from your meds. It’s so frustrating trying to find something that works! Have you ever tried cyclosporine? That’s what did it for me after Prednisone and cellcept failed to do anything. We are all different.
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Ladies we have talked about trying a zoom group with all of us. I have never started a zoom meeting myself, but I am willing to try and get things started if your all interested??
Everyone would need to private message me their email and phone numbers.
we would also need to work out a time that works for everyone. I am generally available anytime. I assume nights or weekends may work best ??
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I’ve never zoomed. I don’t have a computer, just my phone. I’m not a tech person!
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Hi Maureen – you can download zoom app for Iphone I know. You will have to check for android. Amy
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