Is thymectomy something that most people with MG is recommended to do?
Or is just for those with enlarged thymus or thymoma?

/T

This is a discussion you really need to have with your neurologist but at the end of the day, I think it is your decision. I didn't have an enlarged thymus or any sign of a tumor. However, when I had some enlarged lymph nodes in my chest, the docs had to open my chest to get to them to make a diagnosis because they couldn't get to them any other way, even though we tried! Anyway, once they had to open my chest, I insisted they remove my thymus at the same time. At that point I had been diagnosed with mg for 5 years and was having some serious problems with walking. breathing, etc.

My surgeon resisted, but my neuro backed me up and once they removed the thymus, they found a 2nd stage tumor in the thymus which meant I underwent 28 rounds of radiation on my chest. So, if I hadn't insisted on removing the thymus, the tumor would probably have grown much larger and when you research thymus cancer, it is very fast growing and very difficult to treat once it reaches stage 4.

So my point is that you know your body and it is up to you to discuss this with all your docs (neuro and primary care) and make your own decision.

Btw, the enlarged lymph nodes (which the docs thought might be non-Hodgkin's lymphoma) turned out to be sarcoidosis, another autoimmune disease. Fortunately, it is currently in remission.

Good luck!

I'm actually seeing my Nuro Monday and seriously thinking about having mine removed even so it isn't enlarged nor cancerous...

It'll be 2 years this coming April since my crisis and I can't seem to get back in remission...So I think I have nothing to lose to have it removed especially me being 53 it doesn't serve for much and if it can make me feel better I'm willing to chance it.

Has the thymectomy helped your MG?

I think overall it has. I have had a couple of crises since the thymectomy, but I could tie them to infections (UTI, kidney stones and kidney infection). I do IVIG weekly (low dose) and take mestinon timespan and regular and Imuran (which we just lowered the dose of because it seems to be affecting my blood values).

I have also done cyclophosimide and Rituxan. The main thing I have learned is that you have to know your body and know when it is going off track. I worked for 12 years after mg diagnosis but retired on disability at age 62 because I realized the stress was really starting to take a toll on my mg. I was in an upper management position and when my company was bought out, my duties changed drastically and my body just couldn't handle the stress.

I have done much better with the mg since I retired. As I said above, be aware of your body and what is happening to you. Also, I try to stay on top of the latest research and what the new treatments coming up are. I have a great neuro who is willing to work with me and calls me his guinea pig because I am almost always the first of his patients to want to try a new treatment. If I do well, he is more willing to talk to other mg patients about new treatments when they are having similar problems. I try not to try new treatments for the sake of experimentation, but I definitely think being proactive has helped me manage my mg for 16 years.

Good luck!

Well I just came back from my Neurologist and my Thymus is almost none apparent or non existing you can barely see it on the CT scan I had done...So his prognosis is to leave it alone.

We're upping my Imuran back up to 200mg and continuing my IVIg, I'm also on regular Mestinon and Timespan and also taking massive dose of Vit D and B12...I have to agree that STRESS, EMOTIONS and lack of sleep and rest all have a big impact on our conditions. No 2 cases are alike...

We just have to keep on chucking!

Thanks for your answers.

I agree with you that stress makes i worse.

I have an appointment with my neuro next week so i will ask her about thymectomy then.

Anyone else here that have been diagnosed with SFEMG test?

I am seronegative and EMG in my arm and leg muscles looked ok.
I also have no other muscle problems than difficulty swallowing.
They did a SFEMG on the musles around my mouth and told me that it was MG after that.

I have tried Mestinone now for a few weeks with no luck.
My neuro now wants me to start with prednisone 30mg/day.

Have you tried upping Mestinon...

Other option is Azathioprine/Imuran?

Im currently taking 60 mg Mestinoe 3 times a day.
I have tried having dinner from half an hour up to two hours after taking the pill but still cant swallow solid food properly.

I have also tried taking the pills every three hours but then my muscles started to twitch, so i guess that was to much.

Does Azathioprine/Imuran generally have less side effects than prednisone?

Quick answer YES, in any way possible try to stay away from PREDISONE it has adverse side effects! and once you start you can't stop suddenly, with Imuran it's the total opposite.

In my case I'm still having problems from PREDISONE...It took forever to wean off, I've been off since June 2016.

Imuran's downfall is that it takes longer to have it's full effect, it took me 8 months as I was also taking Prednisone at the same time waiting for the Imuran to come to its fullest effect then we started weaning off Preds and that alone was a rough ride...I have intense muscle pain ever since, quads and arms...

I'm sure others will Chime in and attest to Predisone side effects...If you can live with your symptoms and give the Imuran a chance to reach its fullest that's the route I would take...

Talk to your Neurologist about it and see what he/she thinks about it.Do some research on Preds and make your assomption based on what you feel comfortable with.

Good luck.