matt-sereby
Forum Replies Created
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I have GMG but my only principal problem is ocular. After Mestonin and steroids were no help to my closed eye situations I then had fusions. Eight infusions of vyvgart as well as two of rituximab. I got about 4 days of my eyes being open after those. Finally went back to where I was first diagnosed as he had been following me throughout my journey. My ophthalmologist operated on me and attached muscles from my forehead to my eyelids. Can’t tell that it was ever done. My eyes now stay open and close normally. Best thing that ever happened to me. The decision was about 3 years in the making. I spent most of that time with Band-Aids holding my eyes open. Not to be taken lightly but it is a very good solution,or at least a has been for me.
Matt Sereby
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For about a year I had both my eyes taped open everyday with strip said normally hold cuts closed. I’ve had multiple infusions of multiple drugs. (10 times) Nothing work to help my eyes. After a year doing this I went forward with surgery. They actually used a muscle from my forehead to attach to open my eyes. They are open everyday and 100% naturally looking. Once you go this route there is no turning back so make sure it’s for you first. I have virtually no other symptoms of MG although I do have GMG not ocular mg.
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I have surgery coming on the 26th of January for my eyelids. They’re going to add a strap that is muscle from my forehead. When I act excited my eyes will open. In the meantime what I’ve been using for quite a while is dukal butterfly closures which are available from Amazon for pretty cheap. 100 to a pack. I pull my eyelid down and attach one side to the base of my eyelid and then pull it up to my forehead. I’ve learned to wink by scrunching up my eyes from the bottom
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Without a doubt my ocular symptoms. Double vision and pitosis. For several months now I’ve had suture Band-Aids holding my eyes open. Even my driver’s license picture has them. Hahaha. In spite of having mestonin, prednisone, vyvgart and rituxamab the longest stretch of normal I experienced was 4 days. For that I lost my sense of taste for about 4 months. Nothing like eating everything that tastes like metal. I have opted for no more infusions and I am in the process of weaning off of the prednisone. I have not taken mestonin for quite a while. My ophthalmologist is going to do surgery to attach a small strap of muscle from my forehead to my eyelid. Probably won’t look to normal but I won’t have to slap Band-Aids on my face everyday.
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Well there always has to be a naysayer in the group. I guess that’s me. I have had two rounds (8 infusions) of vyvgart. I have weak leg muscles and can’t climb stairs. But my major concern is that both my eyes pretty much closed unless I have Band-Aids holding them open. I saw improvement for about 3 or 4 days. Also had one round of rituxemab. Lost my sense of taste. I could still taste on the first bite but after that everything tasted very very metallic. In conversations with my neurologist I am opting now to have eyelid surgery where they connect the muscle from my forehead before my eyes which only look in the down position get to where they don’t move at all.
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Hello everyone. I need some advice to try and find some solution before things get much worse. I was originally diagnosed with ocular myasthenia gravis. After several years that diagnosis became GMG. I have had double vision for about 5 years now. Last year my right eye began closing. Not drooping but closing. This year my left eye began closing. If I sneeze both my eyes will close and I need to manually open them. Right now I’ve bandaid the right eye open and after 4 or 5 hours of being awake I also Band-Aid the left eye which starts closing. I have been through the usual mestanon and prednisone really to no avail. I do not take the mestanon anymore but I do take 20 mg of Prednisone everyday. In addition I have just finished my second full course of Vyvgart with a round of rituxemab in between. So I have a total of 10 infusions behind me and I still have the same problems. My strength has increased a little bit but my eyes are getting no better. Anyone had this experience and had a solution? I had a brief period of time where my eyes were both open easily. That lasted about 4 days. Everything else that I’ve done lasted a day or two. I am up for license renewal and I am required to go in person. I really would like to have some resolution prior to going for my driver’s license renewal. I really don’t think they were renew a guy walking in with Band-Aids holding his eyes open! I am open to suggestions and would love to hear if anyone had similar eye problems that have been resolved.
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Paul, I can relate to your frustration. I was diagnosed by my opthamologist 5 years ago and then confirm a diagnosis with a neurologist. From then on it’s been all downhill. Gone from one eye somewhat droopy to now staying closed if not propped. Second eye closes to a slit as soon as I go outside. I find that small suture Band-Aids work wonders. With my eye closed I attached one side of the eyelid and then pull up and attach the other side to my forehead. Double vision is always a problem and I have developed essential tremors. They tell me that’s unrelated and is hereditary. I have weakness in my upper legs and suffer climbing stairs. I get up around 6:00 a.m. and by noon I am shot. I have tried pyrodstigm, prednisone and each worked for about one day. I am hoping my answer lies within a specialist for mg. I see that specialist in Richmond Virginia on the 6th. You will find everyone’s journey is different but the key is finding the team of doctors that don’t just pass you back and forth and can give you some solid advice and treatment. If you don’t find it in the set you have find new doctors. The best Advocate you have for you is you. Good luck in your journey2.
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I truly feel your pain. After having my PSA being 60 when they like you to only have a PSA of below 7 I ended up with my prostate removed. The only reason my doctor found it was because I had a bout of prostatitis I believe it’s called. After that they did a PSA for my first time ever even though I have a family history. What a surprise to have him sit me down as soon as you get the results and tell me there’s no question about it I have cancer. They got most of the cancer so I still have some treatments and I’ve had radiation. During the few days I took to recuperate I managed to develop mg. Since that time I’ve become my own advocate because nobody really cares for yourself like yourself. Switched doctors obviously. I went to my ophthalmologist who told me I probably have mg after some testing. Found a neurologist and went to him. I am one of the few 50% who can be diagnosed by blood test. According to the blood test I have it but he told me it is strictly ocular. However I have problems with climbing stairs and it almost exactly coincided with my diagnosis of mg. In fact it was a little before that. He tells me that’s my imagination. I cannot walk in a straight line and I tire easily. I am right now in the process of trying to find a decent different neurologist as my last ophthalmologist visit to see about having surgery to pin my eyelid up resulted in them suggesting maybe I don’t have mg and instead have MS or something similar. I will go see whatever doctor I need to and beat on every door and demand everything I need. This has been absolutely ruining my life. So many things on hold until I can get this ironed out and it’s been since 2017 I’ve been dealing with this. Read all you can and go to your doctor with all the info you can. If they don’t want to listen to you there are more doctors out there. Many of them have simply taken the buy a new Mercedes oath versus the Hippocratic oath.
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Hi everyone. Unfortunately I need to eat some crow. I had been taking a product called Upneeq that I believed wasn’t doing anything for me. Of course I reported that on this chat. Once I quit taking it I was right back to having my eye closed regularly. So here I am back on Upneeq everyday. It has single dosage packs that give you enough to do both eyes along with a little extra in case you miss. Since I only have one droopy eye I put two drops in one eye and then seal the package up with a clip and use another two drops the next day from the same container. They raised the price up to $120 from 105 but it lasts for 2 months so not too bad.
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At my opthalmologist/surgeon to discuss eyelid surgery as it stays closed involuntarily most of the time. Seeing what his suggestion is. Didn’t know there were so many types of surgery! I will keep everyone posted as to how it all works out
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Just an update on the Upneeq product that I was using. After a month I have found it is totally ineffective. Seemed to work in the optometrist office but went downhill after that. Not to say it won’t work for others, but it is not for me.
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I also have vision problems and have prisms 7 and 3. The lens on the right is a coke bottle thickness! My right eye droops so bad that my optometrist cannot provide me with a quality eye exam. On my last check up a couple of weeks ago my eye would not stay open. Once it gets to where I am looking through my eyelashes it simply closes. She had a sample of a new eyedrop called Upneeq which she tried in my eye. It did open it enough for an eye exam but I am not sold on it yet as I still walk around with it open just enough to not see my eyelashes. Have been on it for about a week. Not covered by insurance and runs $105 a month available from the manufacturer by prescription only. I don’t know what my neurologist would think of it but he has been no help in this journey. As for glasses I am 63 and tough on glasses so I purchase from Eyeglass Mart which is national. A plastic frame with progressive lenses and prisms galore run about $90.00. There are days I have used a patch when driving but my other eye is not strong and then gets tired. I then would switch the patch over to the unaffected eye. My tip is never to do that because when you sneeze or laugh or yawn your other eye closes and as we all know won’t open again without help or time. It’s a scary moment with both eyes closed for a few seconds Oooops!
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Thanks for the reply and suggestions. As it turns out I took the suggestion of one of my employees who told me to walk in like I own the place and tell him I’m here for my license. Went and first thing in the morning. Taped only my right eye up and kept my eyes closed until my number was called. Pass my eye test with a Band-Aid holding my eye open. Got my license with a Band-Aid holding my eye open and not one person said anything. But now I’m back to square one.
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I was very frustrated when I started my MG journey and couldn’t figure out how this could happen to me. In talking with my sister who was in private practice I found somewhat of an answer. According to her, and I probably won’t state this correctly, we have a gene or a marker that has been passed down on my mother’s side. Basically something that allows for a roulette wheel of sickness. I know two of the items on it were lupus and psoriasis as well as MG. There were several more but I have no recollection.
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<p style=”text-align: center;”>I’m at the point in my treatment where I don’t know where to go. My first neurologist told me that I was one of the 50% that could be diagnosed with a blood test. Gave me mestonin which fixed my drooping eye for about a day. The eye kept getting worse and worse and I have only been diagnosed as ocular myasthenia. I have weakness in my upper legs and can’t climb stairs without pulling myself up along the railings or I’m exhausted at the top. Eye kept drooping worse and worse. I have three or four prisms in my glasses to keep my vision from being cross-eyed. However when my eyelid closes down to where I see my eyelashes my eye just closes. My doctor would not prescribe anything else basically told me to live with it. I take a path to the right when trying to walk in a straight line and stumble a lot. I got a new neurologist who ran all the standardized tests and found no positive for mg. I have since had an MRI a CAT scan I think it was called a PET scan as well as an EMT on my face and many other blood tests. Really have no answers yet but he did schedule me with a renowned specialist in Richmond. He says he has eliminated most everything which leaves mg left. I’ve been on 20 mcg of prednisone for about a month now and that has made no difference. Over the last two or three months I have found if somebody makes me laugh really hard my droopy right eye closes and my left eye closes and also won’t open voluntarily for about 25 seconds. Starting to scare me quite a bit. I have no answers but at least I have a neurologist who is bent on finding out what is wrong and getting me some solution. My ophthalmologist was going to do surgery on my eyelid but he said he won’t do it until he’s 100% assured that I have myasthenia gravis. Apparently the ice test that they do as a presumptive test has not gone well when I have been there. No solid diagnosis leaves no solid treatment. This has been going on since 2018 or so. Color me frustrated.</p>
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cellcept is an immunosuppressive drug whereas pyridostigm is not. I am scared of getting on immunosuppressants until I absolutely have to.