Hello I would like to introduce myself, my name is Joe from New Hampshire and am a recently diagnosed new patient with MG.

My first observation....it's scary loosing control over parts of your body

It seems that I have had some minor symptoms of MG in my legs, feet, voice and breathing for about a year and things went out of control just about 8 weeks ago with a lot of weakness and breathing problems (not a crisis) including double vision for the first time. This led me to my ophthalmologist and then to a neurologist. After blood tests, CT scan, a tensilon test and a trial of mestinon, I was Dxd with MG without a thyoma.

I am considered serum negative most likely due to the fact that I have already been on a modest dose of Imuran for about 3 years for Crohns and Colitis. The Imuran would suppress any clinical measurements of the antibodies during a blood test. I had a very strong positive reaction to the Mestinon but do find it quite tough on my GI system. I wonder if there any hints or tips on how to tolerate the GI side effects.

The plan for now has been to take the Mestinon (4 - 6 tabs 60mg per day), increase the dosage and hopefully blood levels of Imuran and I had my first 5 days of IVIG last week (Gammunex-C 2gm/kg). The hope is that the IVIG will buy me time until the Imuran can build up to its new strength, hopefully controlling the MG a bit more. I was surprised at how much the IVIG wiped me out though as the week went on, it took a couple of days to bounce back, but I am seeing signs of improvement and I just finished the series last Friday.

Overall right now I'm a but overwhelmed and frankly scared of what I have read and experienced so far. I notice a lot of the members talking about a thymectomy but I do not see them discuss a thyoma. Why would the healthy thymus need to be removed?

This really does seem to be a good site with a lot of experience and information.



Joe

Welcome to the group. I am seronegative MG too. I also have a lot of GI problems and Hashmotos hypothyroiditis. I am on mestinon, and currently weaning off pregnisone (down to 25 mg per day). I have my first IVIG next week. I take my mestinon with a snack usually yogurt or fruit an hour before my meal and do not suffer too much GI problems that way.

Most MGers, I think 85% have an abnormal thymus. About 15% have thymoma and the rest have hyperplasia. Thymectomies are showing good results, with 30% of patients going into remission and almost all the rest showing improvement in symptoms. I am newly diagnosed and still hoping for a thymectomy. My next neuro visit is in July and I will bring it up. My MG has gotten a lot worse in the last 2-3 months. I blame it on the warmer weather. Most MGers get worse in the heat. I also think more of my MG symptoms are breaking through since they reduced my pregnisone.

You found a nice helpful group. let us know if you have any more questions,
kathie

imodium. It saves my life.

Hello Joe, and Welcome... I can appreciate that what you are learning is scaring you.
We are all different, and you may never experience these scenarios. It is important, though, that you arm yourself with all the information you can get your hands on, both good and bad. And as Kathie said, "Ask away..."

Being a Vermonter, now living in Florida, I feel like we have much in common.

While I take 150mg of Mestinon every three hours, plus 1,000mg of Cellcept twice a day, I found that I MUST always take food just prior to taking said pills. If I don't, I can expect stomach and bowel problems.

Hi Joe
welcome
I am new MG and this forum as well. I was diagnosed in early May. I started with blurred and double vison 9 months ago. I am on prednisone and mestinon only right now and my symptoms are pretty mild. I am having some more general symptoms now. I have found much information and support here. Take some time to read the older posts as well and don't be afraid to ask questions
Sandy