Curt,

I agree with you 100% on this. I had a thymectomy as my thymus tissue was abnormally enlarged 10x.

I have a feeling........way down the road. There will be a corellation to everyones MG trigger and in some myasthenics, the root cause will be in the thymus.

I had a bad motorcycle wreck resulting in a staph infection in my leg that took 2 weeks of IV antibiotics to clear up. 2 months later MG symptoms start, therefore my root cause not originating in the thymus.

Others may have no trama, but have a thymoma, the root cause of their MG. Removal of the thymus is necessary, and after removal they improve to remission.

I assume you have not removed your thymus?

Mike

Hi. My daughter was diagnosed at 13 when she suddenly developed slurred speech and muscle weakness. (The neurologist thought she had a brain tumor but tested her for everything in the period of a couple of days.) Over the course of 8 weeks she went from playing power volleyball to being completely bedridden. The studies I read showed that thymectomy is most effective in young, highly antibody positive patients. She had a round of IVIg and,then, had her thymus removed. It literally saved her life. It stopped her rapid decline. She still struggles with MG but her symptoms have stabilized at a (mostly) functional level.

Sarah, I was diagnosed very young also, at the age of 14. After having a very bad case of chicken pox 8 months earlier the symptoms of the MG started coming out, I went from being very active to barely able to walk up the school steps. They did a thymectomy when I was 14. I did not have a thymoma.

As we get older the thymus is supposed to be less and less involved, which may beg the question Curt is asking. Why have it removed if there is no reason to. I understand their are studies revealing the younger aged are to potentially benefit the most. Doesn't seem that great for men all around though. Is the thymus producing the antibodies that attack us?

Whether it is removed or not, it seems if the triggers for MG are lessened and made virtually non-existent over time, one would think improvement would be in order regardless.

I recently was hearing that if mother is very stressed or exposed to abuse of before giving birth, while baby being formed, and/or child growing up is exposed to very stressed or abused environment, that this literally translates to auto-immune and various disease in people's lives...So...Not sure what to say other than I agree with Curt, and that I also understand why people have them as well....People have them because they are told it will help, or they read the studies that say these things. Where are the follow up studies on people with thymectomys at? The ones in five or ten years etc...Just sayin

best wishes for peace to all,

TJ

TJ,

Do you have links for the corellation between mother stress and autoimmmune disease? I have heard of the breast fed vs. formula theories for autoimmune disease.

Back to Curts initial statement of "This is serious stuff. Neuros don't know as much about this disease as they pretend" I agree with you halfway there. I feel we should be treated by both a neuro AND and immunologist.

Mike

Hi everyone
Must say, the first thing that BOTH my Neruo and Cardio surgeon told me when they suggested that we go ahead with the Thymectomy was that there is NO guarantee that it will positively affect my MG, or that there is any proof that it is the cause of the MG.
What they did tell me is that the CT scan had picked up a large tumour in the Thymus and that at this point it looked fully encapsulated. So now would be a good time to get the Tumour & the thymus out. I am fortunate that it turned out the tumour was Benign, it turns out that it had started to expand outside the Thymus and this caused a few complications with the removal around the Phrenic nerve, which once again I am lucky to walk away without any permanent damage.
So yes, be very careful, and take all options into account before having a Thymectomy, it IS major surgery, and has many risks. Also select your surgeon carefully if you can.
In my case I am glad I had the surgery done, Even if I did not have MG, that Tumour was up to no good, and considering the organs that it affects when it gets out there are the lungs and heart, I am glad I am rid of it !

Regards
Christo

MikeyWRX (Subaru, I assume-hot little car) -

No thymectomy here. By the time I found a doc who could tell me what was wrong, I was so pissed off at the lot of them, that I was ready to tear his head off when he started talking about major surgery. I put an immediate stop to the discussion and told him we were treating it medically. While it took 2 1/2 years to get it under control, it hasn't caused me too much trouble since December 2007 when I was in a coma because of it.

I haven't got a clue about my thymus...we never looked at it and I'm not dead from it. But another hospitalization is not something I'm up for, either. I've had some serious surgeries thanks to prednisone and am not up for any more. I'm also not willing to have my sternum cracked. My mother had it done twice for open heart surgery and she went through heel on earth with the wounds...for years. And she was a cardiac nurse! That cured me. I'm a guy who likes to straighten his motorcycle out in a parking space by picking it up and moving it over. And I don't like chronic pain!

Curt

My thymus looked great on CT scan, so I refused to have mine removed. My neuro pushed and pushed for it but I did my research long before I got my appt. with her. If there had been a mass or other problem the discussion may have gone differently with the neuro getting her thymectomy. I'm still in remission. If you know you have lupus, I would highly suggest looking into the new meds that are being approved for treatment. These biologicals use T cells to work efficiently.

reddutchgirl - your comments mimic my experience.

I think what happens for most of us is that we become so traumatized by all the events that lead up to the point of a final diagnosis and that we are so physically and emotionally beaten down by these frightening symptoms we all have with MG, that people find themselves willing to do anything anyone tells them will offer relief. When my neuro told me I should do it and I said absolutely not, he was really shocked. Whenever he had told any other patient to do it, they readily complied.

My mother was an RN for 50 years, mostly in coronary care. I hated doctors from an early stage in life and this made for an interesting dynamic in my family, especially since I also have five first cousins who are doctors. Anyway, I had seen so many bad choices made by people and their doctors in my life, that I early on resolved not to ever subject myself to a doctor's knee-jerk recommendations. This attitude has served me well and saved me a great deal of trauma in life. My first response to any recommendation is a resounding "NO!" Then I go do my research and decide what I think is best.

People are like sheep - passive and too docile - when it comes to facing doctors. Rather than taking aggressive, pro-active stances in their care, they simply do whatever doctors tell them to do, even if they don't understand why. In the case of thymectomies, it does appear that young women MAY benefit. People with masses must have them removed, for obvious reasons, but for the rest of us, there is no clear evidence it will help.

Curt

At least thymectomy is an alternative for young women as there are great concerns about bone loss from long term prednisone use (especially when the child is not done growing) and possible future birth defects from the autoimmune drugs should these women want to bear children. The theory of trauma is interesting. My daughter is originally from Korea (so I assume great stress for the unwed birth mother). The docs we've seen seem to support some genetic link as they say the vessels in my daughter's eyes indicate that her birth mother may be a Type I diabetic. Fortunately, my daughter was able to have her thymus removed with scopes thru her side because the gland was intact. My dad has had two open chest cardiac operations and does seem to have trauma himself from the whole experience.

Mike, you said:

"I have heard of the breast fed vs. formula theories for autoimmune disease" - That sounds like silliness to me, but much does sound silly.

As far as the link goes for what I am reporting, I am sure you can find information out there about the links. I was watching the newest Zeitgeist film, "going forward" and those films "have no boundaries" to what is covered in our world. It can be construed as conspiracy theory to many. There are things that happen in our world everyday and people are blinded and controlled by media and the hand that feeds them. We must open our eyes, and I believe love is the answer to cure this world of what it needs. Love and understand, and knowledge is power. Good luck to you.

I have been in contact with a Dr. in Israel, They have a Different take on MG and its treatment (For some reason MG is more common there) He indicated that a Thymectomy is probably unnecessary unless there is a thymoma. According to him the risks outweigh the benefits. According to him they use a combo drug therapy. He admits that even with the therapy a relapse usually occurs mostly due to drug tolerance but usually after many years. He made a intresting comment that they often perscribe baby formula to their patients of all ages and they had some success according to him. IOm not sure I will be willing to do that but I might try Ensure
It is hard to be young with this disease because this deamon is always present to wreck your chances of a normal life . You are right the Doctors can only guess at what treatments will be effective. In my case Mestinon is useless Prednisone works but the side effects are horrible .