[draggin']

So, its been awhile since Ive posted. Ive done ok with using crutches to walk very short distances and Ive adapted to using just a few fingers to do things. My eyes get weak but rest and ice helps........But every now and then I decide I want to live this "normal life" that all the literature talks about and, when its not hot and humid, i try going somewhere or doing something. Nothing big mind you. For example this past weekend there was a band I like that was playing right here in town so I didnt have to travel far at all. My husband parked at door and I used my crutches to walk just a little way to my seat- no steps. The band played for an hour and we left. The next day I was weak as expected but thought rest would snap me out of it. By that night my breathing was labored and now Im on prednisone again. Everytime I have a set back my inlaws push finding another doctor because they've read that most people with MG can live normal lives. We did all that 20 years ago and many dollars later we came back to MG. So my question is: when this first started they checked my thymus and said it looked fine and decided not to take it out since they werent sure I had MG. Now my neurologist says that its too late to take it out. He said it usually should be taken out within the first few years to do any good. Has anyone had success with taking it out later?

[AnnieB3]

Draggin', I'm sorry you haven't gotten replies. I don't have experience with a thymectomy so I was waiting for those who do to chime in.

What meds are you on? Have they tried IVIG? How old are you?

There are no guarantees with a thymectomy, even if they do it within a year after the disease starts. There are as many success stories as there are those who saw no improvement.

From what you're saying, you wouldn't be in good enough MG shape to have a thymectomy right now anyway. I hope you'll talk to your neuro about more meds to get you stable.

I wish I had more info for you. Hang in there. I know how hard it is to not be able to do even the simplest of things. It's beyond frustrating.


Annie

[tysondouglass]

draggin- it is my understanding that thymectomy's are effective in these cases; young patients under 20, patients with a hyperplastic tumor, or any tumor at all. (All of that is what I have gathered from doctors that I have seen and experience from others here). However there are many people who did not have a tumor and had their thymus out at a younger age I believe. I am 18 and had a tumor on my thymus, though my CT scan did not show a tumor, they found it when they went in and it was quite large.

my opinion would be not to worry about the thymectomy..unless u see a specialist who tells u to do so. surgery is very dangerous w mg and especially at an older age. hope this helps.

[Jenn220]

Draggin - the answer is, who knows.

(initial point - if there is a tumor or abnormality of the thymus, the thymus comes out, no question. The uncertainty / debate surrounding thymectomy is for patients with a normal thymus)

Yes, thymectomy is thought to be most beneficial to younger patients (but that includes patients in their 30s and maybe even 40s) within the first few years of disease onset. But even in those situations it's not a given that the thymectomy will help. About 1/3 of patients will go into remission, 1/3 will be able to take less medication, and 1/3 will have no benefit from the thymectomy. There's a clinical trial underway to hopefully gain more insight into the effectiveness of thymectomy: https://mgtx.soph.uab.edu/MGTX/about.htm

But, I've met people online who are in their 50s and 60s and had a thymectomy many years after they developed MG and have had success. Tyson and Annie are right, though, that surgery can be very tough and should be done when you're stronger and physically capable to handle it without going into crisis.

Do you have any benefit from Mestinon? Or tried any other treatments, like Imuran, CellCept, IVIg, Methotrexate, etc? You may need to make some changes in those treatments, or try something new, to try and get the MG under control.

[draggin']

Yes, Ive been on Mestinon for 20 years and it has worked well. Now Ill be 50 in Dec and my symptoms have worsened the past 3 years. Ive been on oral steroids several times and IV's in the hospital a couple times. Both seem to pull me through the breathing difficulties and eyes get better but nothing seems to be improving the legs and hands. We tried Imuran but I thought it was going to kill me. High fever, chills and vomiting...all of which made my symptoms worse. My neuro has mentioned trying plasmapheris or IVIG and, after reading some posts, I may agree to trying one of them. (I, like others, worry about insurance coverage.) Although, if I could get that "normal life" that the brochures talk about...it would be worth it. I agree also that as weak as I am, I couldnt handle thymectomy right now. (I had to have a lumpectomy two years ago and didnt do well afterwards). I just know eventually, we will be blessed with grandchildren and I want to be able to hold them and play with them. I will talk more to neuro about my options....thanks!

[AnnieB3]

Have you been checked out for other things like thyroid, B12, electrolytes, etc.? There are other things which can cause MG to be worse or weaken muscles. It's good to make sure there's nothing else making things worse.

I really hope you can find a way to improve. This disease just sucks.

Annie

[draggin']

Originally Posted by AnnieB3

Have you been checked out for other things like thyroid, B12, electrolytes, etc.? There are other things which can cause MG to be worse or weaken muscles. It's good to make sure there's nothing else making things worse.

I really hope you can find a way to improve. This disease just sucks.

Annie

I take B12 drops every day. They say my thyroid is good but I do have benign cyst on it. So it is being watched. I was low in iron and vitamin D so I now take those every day too. Thanks for asking

[alice md]

I think that one of our biggest enemies is that illusion of "all MG patients lead a normal life".
The truth is that some do and some don't. Just like with every other illness. There are patients with leukemia that recover from their illness and go on to leading a completely normal life, and others that don't.
It is not because they have bad physicians, or do not truly want to recover. It is because this is the way the illness is.
With all the advances of modern medicine some patients still have a disease that is refractory to treatment.
When this reality is accepted by the physician and the patient, there is a good ground for treatment and supportive care that can improve one's life.
It is unfair of people around you to make you doubt your neurologist just because you don't recover from your illness.
Chasing unrealistic hope can only lead to eventual frustration and disappointment.

[draggin']

Originally Posted by alice md

I think that one of our biggest enemies is that illusion of "all MG patients lead a normal life".
The truth is that some do and some don't. Just like with every other illness. There are patients with leukemia that recover from their illness and go on to leading a completely normal life, and others that don't.
It is not because they have bad physicians, or do not truly want to recover. It is because this is the way the illness is.
With all the advances of modern medicine some patients still have a disease that is refractory to treatment.
When this reality is accepted by the physician and the patient, there is a good ground for treatment and supportive care that can improve one's life.
It is unfair of people around you to make you doubt your neurologist just because you don't recover from your illness.
Chasing unrealistic hope can only lead to eventual frustration and disappointment.

Yes! Thank you! I get so upset when I see that in literature. It was probably meant to make us feel better but it really just opens up alot of doubt for us to deal with.