Hi Annie,

It is now 15 months since my thymectomy. It's a little hard for me to say when I started to feel improvements as I had a thymoma which had opened and this meant I had 25 sessions of radiation.

I think after I got over the radiation I could see some improvement about 6 months after the op. That was the start of our summer here in Australia so of course that didnt help.

I am slowly coming down on the prediscone and at the moment that's all on. The neuro said he would consider my thymectomy to be successful. I still have symptoms but not as bad as pre op.

As you say there is no rhyme nor reason to MG and I still worry about it getting worse but I live for the day and feel incredibly lucky that my MG symptoms revealed I had cancer!

Good luck Annie! Not sure if I've answered your question but hope I have helped.

Best wishes

Gezc

"there is no rhyme or reason to MG" is misleading somewhat, I think, due to a problem with MG too often being thought of as a single, particular disease, rather than a broader range of diseases with common symptoms.

MG, certainly is variable in symptoms even from day to day, but I think some of mystery is because there are varying types of MG and varying causes and various combinations of MG and other problems.

If you think of MG as a catch-all name somewhat like the word "cancer" it might be better.

Congenital, acquired, LEMS, seropostive/seronegative, MG caused by abnormal thymus, drug induced, ocular, bulbar, general,.... are not all the same (and more variations are likely to be discovered as new tests are found).

LEMS vs acquired MG --they are really only similar in the symptoms--not in the etiology of the diseases. Calling both MG confuses us rather than enlightens us. Seropositive and seronegative are surely both different versions of MG and as such probably need to be treated differently--seropositive we know what is happening (mostly) and seronegative we are uncertain.

And of course, there is MG alone, or MG in addition to other medical conditions can be greatly different.

When the medical world says that MG patients can be treated and go on to live a reasonably normal life, I think they are referring to two classes of MG patients (who do make up the majority of those diagnosed with MG):
those with the main problem being MG and few if any other conditions AND
--those with obvious thymus problems that a thymectomy will improve
--those with achr positive antibody test (without thymus problem) who can tolerate immune lowering drugs

You would say most cancer patients can be treated and go on to lead a normal life but you might not say most colon cancer patients can be treated and go on to lead a normal life.

There is rhyme and reason with some versions of MG--luckily that includes the majority of those who have it and do go on to lead normal lives or at least tolerable ones.

The waiting game is difficult, because you don't know if you will improve or how much. Not having a way to measure improvement is difficult, too. Perhaps it is too soon for you to know, but many people here - who have had thymectomy and not - are here to support you. Hopefully those who have undergone surgery will have useful information for you. Hug!

Gez, 25 sessions of radiation? You are an amazing person!

Hi, Annie! I have not had a thymectomy, but I can definitely relate to what many of us think of as the MG roller coaster ride. It is hard for me when I get my hopes up and think that finally, things are going to get better... and then there is discouraging setback to deal with, or a long wait projected before we know if something is going to work or not. I hope others who have had thymectomy will share their experiences! Please know that you are among friends and that we are here to support and encourage you! Hugs, Rosie

Your post resounds with me. I was shaking my head, YES!, as I read it.
MG is not a one size fits all. I am seronegative, but have almost every symptom and respond to Mestinon. I have other conditions that are pretty rough too. It is a rollercoaster ride. Each day I don't know it I'll be at the top or screaming down to a crash.

I pray that the thymectomy gives you relief!
Carly

Carly, there has been one study that showed that seronegatives (in the study) were seropositive when they used a different technique to inspect the blood. Additionally, some become seropositive under the old test. I'm seronegative, but my maternal aunt has plain old seropositive MG. To confuse tings more, my neuro says that some people with a diagnosis of ocular MG exhibit weakness associated with GMG of which they are unaware! I wonder about my aunt's strength. With 640-some neuromuscular junctions used and with people's activity patterns so varied, it's not surprising that MG is unpredictable. There are a lot of variables to consider even within each individual!

Hi Annie,
I had a thymectomy last July, and I too was told that it would take about a year to see an effect from it. But since then, I've been on a high dose of prednisone (now tapered to a moderate/low dose), am still receiving IVIG once a month, and am taking Imuran. I am doing so so much better than I was last summer, but it's hard to pinpoint which thing is helping me! Probably all of them. I had plasmapheresis right after my surgery, which made me feel great for a few weeks, and then I was very sad when my symptoms returned when it wore off. And then I think the physical stress from the surgery and from the radiation were making my symptoms worse, so that from August-December, I was sicker than I'd been before the surgery.

And I did feel really discouraged at times, and couldn't even think about the future at all because I couldn't deal with the possibility that I might never feel better. When I was feeling terrible, it was hard to remember what it was like to feel good. But please don't worry! And be patient. You likely will feel better, it just takes some time. And, as always, if your symptoms are getting worse and you're having trouble breathing or much trouble swallowing, call your neuro and let them know. Don't think, Oh, I won't tell them yet because I should be getting better because I had a thymectomy.

Hopefully you'll be feeling better soon!

Annie,
I've had both antibody tests and they were negative. The RNS test was also negative. I do have a confirmed myopathy (non-inflammatory) that shows extensively on EMG testing. I have POTS (autonomic dysfunction) as well as a few other things. The Mestinon seems to make me feel better, but it could be b/c it helps the POTS symptoms a bit. The neuro says I could have double seroneg. MG (that 12 percent of folks that do) plus my myopathy. We just don't know for sure. I'm just grateful the Mestinon helps me somewhat. I'm going to be seen by a big university teaching hospital later this year for another evaluation. We'll see how that goes. It's a roller coaster for sure, but I have a solid foundation
that never leaves or forsakes me.

Have a great day!
Carly

This was the hardest thing for me to deal with ,the waiting game.After my thymectomy ,l knew it would take a while but l did not expect it to drag on as it did........logically l knew but emotionally it did my head in,12 months after surgery when all the physical effects of the surgery had abated,l was not happy with my progress.l was still taking an array of drugs that l felt were not doing me any favours (side effect wise) and was seriously wondering if thymectomy was right for me.Can't say when it started to turn around around 18 mths to 2 years l guess.

Totally drug free 5 years after,mild symptoms.

Now its been 13 years,still drug free,have an array of mild to sometimes eekk symptoms but manage through lifestyle changes.So l can't complain have other issues mainly thyroid so it can be hard to differentiate those from mg at times.

As l've said in the past,l have no idea why some treatments work well for some and not others,l have been very lucky .

In the mean time fight the good fight

Annie
Are you seropositive & was your thymus gland enlarged. That is my case & I greatly improved within a month after surgery. Went from 20 60mg tablets a day to 4 60mg a day. It took 10 years before I was drug free, but I think that was my own insecurities to give them up. So have you any improvement from before surgery?

My neuro has stated it could take up to 5 years. It can be different for all of us.
After thymectomy, a percentage see their symptoms lessen in time and some even achieve remission. Be patient and keep treating your symptoms.

For me, I had a thymoma removed then 6 weeks of proton radiation and have been refractive to most treatments (over 3 years). Some with thymoma are symptom free pretty immediately after removal and have symptoms only appear when thymoma has reoccurred.

I hope you fall into the category of remission and soon!
-sherry
PS...did you get a copy of your pathology report?

Hi, Annie, I'm so glad you are recuperating well. I had my thymectomy last August. When they said it would be 1-2 years for results, I didn't believe them. I'm a lot older than you, so it takes longer to heal. You will recover from surgery quickly -I did. But the MG hangs on for awhile. I started ivig after my surgery and cellcept four months after. I went through two neuro's before I got to one who could put all the treatments together. I would be lying if I said this past year wasn't hard. It was. But I saw my neuro yesterday and he thinks I'm on my way to remission. I'm hopeful, but I know it will take time.
My advice-take one day, one week, one month at a time. You have great prospects for remission. I keep coming back to this group for my inspiration. Hang in there... We're rooting for you!
Be well,

I wish I had something to contribute. Great post Russ, BTW.

The only thing I can say is that I didn't have a thymoma. or enlarged Thymus. My MG specialist said he doesn't remove the thymus of anyone over 40 - I suspect he would if they had thymoma or an enlarged thymus.

I hope you see some relief from your surgery.

Thank you everybody for the support and great answers!

I am seropositive with generalized mg btw. I did not have a thymoma but, newmugg, I did get a copy of the pathology report which said my thymus was a bit enlarged (not enough to be seen in my MRI). It also said that the findings were consistent with those diagnosed with mg which is good I think?

And Debbie I am doing better but it hard to tell if its from the surgery or the prednisone and cellcept. I got my thymectomy when being hospitalized for an exacerbation of symptoms (couldn't swallow at all so I couldn't take my pills) so during that time I also started prednisone and began cellcept two weeks after. But my talking gas gotten clearer, I rarely have trouble swallowing , and my eating is great! (Back to being able to eat salads, pork chops and even steak sometimes!!)

So glad to hear your symptoms are improving! Terrific news on pathology report.

My neuro told me that if I ever did become symptom free (remission) that she would keep me on immunosuppressant (cellcept/imuran/tacrolimus, etc) for another year or so to make sure I remained symptom free and then taper off. (You would hate to get off of meds that take so long to kick in only to have to start all over again)

Hugs,
Sherry