Kelly Criezis
Forum Replies Created
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Oh I see thank you so much for the clarification and bless you I hope you find some relief
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Hi I am curious if you could share while you were not a candidate. This would be interesting to know in case my husband might need it in the future. Thanks and good luck!
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My husband was diagnosed with ocular MG almost a year ago and he’s also started having a little bit of intermittent muscle weakness after almost finishing his second round of prednisone. Hoping that the second round does it and this does not progress but there are a lot of new treatments out for the generalized Mg including a brand new one that his physician loves called Vyvgart. Much easier dosing than some of the other ones and seems to be pretty effective and less side effects but not sure exactly where the neurologist are putting it in the course of treatment. There are several others coming out very soon so a lot of positive things on the horizon for such a rare disease. Make sure you read up on it and also ask your physician about them. Good luck and God bless
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Lots of new options coming which is great! Â Regarding Soliris, The drug has been around for quite some time but has only been approved for the MG indication more recently. It is quite expensive but there is patient support available through the manufacturer.
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A six week course of prednisone put this into remission for my husband as of now since October
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My husband was pretty much diagnosed within an extremely short time. The eye doctor was concerned at a normal check up about the eye which had just started dripping and immediately referred him to an ophthalmologist neurologist who preliminarily diagnosed him with ocular MG. Being in the pharmaceutical industry by immediately looked for a neurologist for a baseline. Someone who was not just a neurologist but had a high number of MG patients and was very well-versed in it. It took us a month to get that appointment but he did some confirmatory test. We were very blessed I think
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My husband just has ocular mg at this point. When we spoke to his neurologist a couple weeks ago he told my husband to get COVID booster as soon as possible. He had started prednisone (and is on mestinon) and I wasn’t really comfortable with him getting the booster so we tentatively decided to not get it and wait until after the prednisone to make a decision. He had another appointment as a check up with the neurologist this week and I expressed my concerns about the booster again; the neurologist said that previously they were recommending everyone get it but now because of the mixed messages from FDA and CDC they are recommending hold off. This is not a recommendation for any of you but just telling you what my husband’s neurologist said.  He is affiliated with Hackensack medical center in NJ.
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Hi Craig thank you so much for your comments they are very helpful! Â Best to you as well!
kelly
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I don’t want to sound naïve but my husband is anxiously waiting the start of prednisone but first his neurologist wants to make sure that all of his scans are clear. They saw some potential cysts on his kidneys So he is now on his fourth scan in past 2 weeks being diagnosed with only ocular MG. His neurologist wanted to do a baseline Brain scan, CT of the chest and then once they saw some shadows he had to do an ultrasound of the chest. Now they didn’t show  anything so he has to do a CT scan with and without contrast on his abdomen. He is getting very frustrated because he wants to start the prednisone which we are hoping will correct the drooping eyelid and double vision and hopefully, as some studies have shown, prevent potential onset of generalized MG. Again we are really looking forward to starting the prednisone and know it is a miracle drug though is not 100%. However I’m starting to get worried about these comments about being more cautious about going out. The doctor did recommend he get a booster after having had both Moderna shots but we both really think it is too soon as I’m not convinced the initial booster didn’t trigger something in his system to bring this on (Though very well aware that I could be wrong). Regardless, we do not regret him getting the first set of vaccines. However we have a daughter going to college and son very active in an intense soccer league and lots of traveling  and now I’m starting to be concerned that my husband should be more sheltering in place once he starts the prednisone. I feel like if he’s careful and masks up and washes his hands we should be all right but maybe you can share if any of you have gotten sick from going out while you are on prednisone or what the risks are. Of course we will reconfirm all our concerns with our physician. Thanks so much this is all just so new to us (Sorry for the long post)
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Thank you! Â Is there an income requirement?
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Hi Barry. I agree with the gentleman who mentioned you need to stick with a neurologist who has a lot of experience in MG. My husband was diagnosed with ocular about 18 months ago and through this group I was able to find a wonderful neurologist in Hackensack New Jersey who has been a blessing to him. He deals with a lot of MG cases and quite a few of them are very critical hands his understanding of the correct approach. In the end it is a bit of an art more than a science but we have the upmost confidence in his physician. Good luck if you are in New Jersey happy to share his name
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My husband is the one with MG just ocular at this point but I have done acupuncture for infertility and it is not scary at all. Actually very relaxing and rejuvenating so I would encourage you to try it and good luck with the MG!