I'm in east county San Diego (last 18 yrs) dx in northern ca........put on 60 mg mestinon 4 times daily in 1991......last 5 yrs added 180 mg mestinon for night time........no other prescriptions and doing very well on the mestinon....

Hi all

I'm from way out in Botswana...
my brother found me this group and I;m sure glad he did. I find the support and feedback helpful.

I'm on 20mg prednisone, 100mg Imuran.
Currently considering thymectomy and plasmatheris, as I want some relief from this sleepy eye and difficulty swallowing.
Sleepy eye gets no relief from meds. Drugs help with everything else like arms and legs and bulbar muscles.

NEGB it's interesting that you say baby was the trigger.
I also experienced symptoms 5 - 6 months after having a baby, and out of all the things I've experienced, motherhood was very stressful and caused me alot of anxiety, stress and resentment. bad for a mother. But i guess I wasn't ready for the responsibilities.

Of course, things got easier and Im a proud mama now 18 months later!

Fatima

I have had the ocular symptoms for about two years and had multiple tests. I finally got diagnosed at UNC with a single fiber emg test. They say I just have ocular mg but a virus could trigger the generalized mg. I take Mestinon 60-120 three times a day. I had a scan of my chest and it was negative. Not that they would do anything since I only have ocular symptoms. I know ocular mg is nowhere near general mg, but you guys give me great inspiration. If I don't take the mestinon, I have a droopy eyelid and double vision so bad it's hard to function in the world. I wish everyone the best.

Hi all,
I'm from Brooklyn, NY. I'm currently splitting my time between Brooklyn and Cambridge, MA, but I'm looking to move to San Francisco in the coming year.

I was prescribed 60 mg of Mestinon 4x daily with my initial diagnosis. I had my thymus gland removed 5 months after being diagnosed. I was prescribed 20mg Prednisone daily last year and was weened off of it after 3 months. I take 60 mg Mestinon as needed per the suggestion of my neurologist.

I know that treatment will differ from region to region, and even from hospital to hospital, as protocol differs from one hospital to the next and even depending on how knowledgeable the neurologist is. Both of my parents are medical professionals and say that they have never followed "exactly" the same protocol when changing the hospitals they work in - each hospital just has a slightly different set of rules for doing things...

what a relief it is to find this support group site, live up in mendocino county, went to UCSF, they saved my life. God bless to you all.

Thanks for being part of the group here. A fine bunch of people.

I am from Central NY. Quite literally the middle of nowhere. I had to travel 4 hours to Strong Memorial in Rochester in order to be diagnosed and was immediately put on Prednisone and Mestinon as well as given pheresis treatments. A few months later I had a thymectomy. When my condition started declining again I was put on CellCept in addition to the other meds. Since then (7 years) I have been able to be weened off the prednisone and am doing pretty well with just the CellCept and Mestinon. However since the thymectomy and the start of CellCept happened only months from each other I really couldn't tell you which one has been the most effective.

I also have a Dr. who likes to push CellCept for MG. And I am so glad she does, I don't know what would have happened were I stuck with just Prednisone!

Hi Folks, this is my first post...diagnosed about one month ago. Plagued with double vision, but that is about the only symptom now. On Mestinon, 60mg bid, Imuran, 50mg,bid. Am being treated by local Neurologist, but live in small community so I suspect his MG caseload very limited. I'm 72 now, so not a Thymectomy candidate. Find myself driving car with one eye closed...does diplopia ever go away?

Guess I should add that I'm from Farmington, NM. kg

I'm from a suburb of Chicago. My neuro is trying to be helpful but I am his first MG patient. I have just made an appt to be seen at Rush Hospitals MG clinic. Has anyone been seen there? I found out that I had MG when I went in to have surgery on my eyelids due to drooping. Fortunately he recognized the signs and sent me to a neuro. I have been on Mestinon 60/60/90 and prednisone up to 40 and now going back down at 15 now. By seeing what the Mestinon improves I have come tomrealize that I had many symptoms for at least 4 years but fortunately no crisis situations. Droopy eye -my kids thought I was dozing off, and some blurred vision, falls and clumsiness that I just thought was my lack of grace, typing errors, coughing and choking - I thought I was eating too fast, tired and lack of energy -thought i was getting older, some chest pains, Now on mestinon there is a clear difference and I feel much better most of the time. I pace my activities and take breaks. I set more realistic goals on getting things done. From reading other people's stories I worry about what is to come and the progression. I decided that I want to be seen somewhere that has experience with MG.

Patnoenergy- people have had some good things to say about Mayo. Have you considered going there?

kg, you could try upping your mestinon dosage a bit to help with the double vision....However, it may not be effective for you if you've had the double vision with and without the mestinon. If the Diplopia is the only symptom you have, and the mestinon can't help with it, that sort of narrows it down unless you do not have MG...You were tested positive for MG, correct?

If you were tested positive for MG, what I said about upping the dosage of mestinon is one of your only options, and you really can't take a whole lot more anyway, as the imuran will take awhile to work, if it indeed does work, which I hope it will of course. No guarantees with this disease.

Some depends on your tolerance as well.

Best of luck and welcome,

TJ

pat, glad you didnt have surgery on your eyelids...lol

You shouldn't worry about the progression of the disease at this point in my opinion. Once you are treating the disease with some success, pushing it back as you have with the Prednisone, staying as healthy as you can and avoiding stressful situations as much as possible is all you can do. If you were in a remission of sorts, of course you would have a chance of getting out of remission. At this point, it sounds as if you've got control of the MG, and that is more than a lot of people can even say. I am happy for you and wish you continued successes...

Peace,

TJ

Thanks, TJ, yes I have had a diagnosis based upon my bloodwork. Apparently, significant antibidies that are unique to the disease. I've got to tell you how impressed I am at your activity on this site. You are, clearly, a blessing to the many. kg

Thanks Kg,

I appreciate it. People here have helped me through a rough patch, and just finding someone to share things about MG, particularly with people that understand, is truly an uplifting experience for anyone with this crazy, debilitating disease.

Regards,

TJ