Cat scan last Friday
 

Finally, a year after my diagnosis, my neurologist decided to do a thymic cat scan. I had it done last Friday. I should know something next week. I don't know whether to wish for a thymoma, surgery, and hope for a cure; or to wish that the test comes back negative.

Another note; I changed blood pressure medications. I got off of the beta blockers. I have noticed some improvement though I am certainly not back to normal.

I would wish for an answer, accept what it is and go from there. That way you won't be disappointed if it is positive or negative news. Good luck :hug:

Even if there is not a thymoma, if they see hyperplasia or enlargement and you are under 60 yrs of age, I think the general rule now is to do a thymectomy now. From what I read it has a pretty good outcome with almost a third going into remission, another third seeing improvement and the other third no worse when they started. I remember reading that remission can take up to 2 years because antibodies can circulate for that long.

I am hoping for a thymectomy. I think the neuro said that they often do plasmapharesis first to get you in good shape and do the surgery within a couple weeks after that.

i am hoping for the best outcome for you and remission,
kathie

Celeste, I have been thinking about you. Any word on your cat scan yet?

kathie

I called this morning and the results were not there yet. Hopefully I'll know something tomorrow.

Well I guess I get to worry all weekend. I was told that I could be told the results of the scan over the phone by the receptionist. Now that the results are back, they won't discuss it with me. The doctor is out today. He will call me if he happens to get their message; otherwise, I get to try again Monday. I think that they found something.

Celeste, try not to worry too much, I know how hard that is. It may not be a thymoma, only an enlargement or hyperplasia. If it is a thymoma, I believe most of these are non-cancerous. They have new techniques for surgery that are not so invasive now.

Just try to focus on this if you need a thymectomy, it may be your best chance for a full remission. I will keep you in my prayers and let us know as soon as you hear something.

kathie

Celeste, I was in your shoes a month and a half ago and I think you should do whatever it takes to not worry. If there is a need for urgent action, I'm sure they wouldn't wait until Monday to speak with you.

If you have a thymoma, you and your docs have plenty of time to decide how to deal with it. Thymomas are very slow growing.

If you have a lesser thymus abnormality (like hyperplasia), you have even more time for a decision and may choose to do nothing.

Your results may be normal, in which case, the receptionist can't tell you anything anyway.

The worst is just 'not knowing', but try to find a way to be OK with that. Some things, you just can't know about today and you can't change that. It's best not to dwell on what you can't change.

I hope you get good news at the first possible moment and I hope you don't worry so much about the unknown. I'm sure the news is much, much better than your worst fear.

I called the doctor's office again this morning. They said that he would call me back after 5:00 pm. They would not remotely discuss anything with me. Then I called the place that did the test. They will give me the results if I drive to their office 45 miles away. It would make me miss work which I can't afford to do today.

Hang in there, Celeste. My thoughts and prayers are wish you.
Hoping for an improvement in your condition
kathie

I don't think I have good news. My thymus was normal. I have a small nodule in one of my lungs. I have never smoked. I have to contact my primary care physician in the morning and decide what to do from here.

Oh dear, that certainly wasn't the news you hoped for, was it? I'm sorry you didn't have a clear scan.

My friend Deb was in the exact same situation years ago. She however, DID smoke. She had a VATT thymectomy and removal of her mass at the same time. The mass was negative. It was removed and she went on without any more problems from that.

Try not to worry until there is something definitive to worry about if you can. Just remember there are many causes for nodules, masses, etc and not all of them are bad, or will have a bad outcome.

Keep us posted. Big hugs!

Two years ago on a pre-op xray, they found what they called 3 small cysts in my lungs. They said they were small and that they would watch them. I had a follow up xray this past year and there was no change in them so my doctor is not concerned.

I hope it does not turn out to be be of concern for you to. Did the neuro discus a thymectomy or see any hyperplasia? Let us know how things go.
kathie

Celeste, I'm sorry you are having to face down the unknown. I really hope it isn't cancer. If it ends up being small cell lung cancer, then, obviously, you should be re/tested for LEMS.

When I was at the dentist recently, the nurse said that her Mom had LEMS and had a very successful removal and radiation of the lung cancer. It isn't always a doom and gloom situation.

It's sort of funny how they'll gleefully tell you that you're fine and everything was negative but act like a CIA Op when it's not.

Sending positive thoughts your way! Try to do something nice for yourself in the meantime. Stress never helps. ;)

:hug:
Annie

I am going in to see my primary care giver today. We'll see what he says and take it from there. I really appreciate everybody's input. I don't even know if I have been tested for LEMS. I really don't think I have.

I hope all goes well.

I went to my primary care physician. He is sending me to a pulmonologist right away. I'm not sure what day I will go.

Does anybody know what exact test I should ask about for LEMS? I have not been checked for it. My symptoms are really more in line with LEMS than with MG. I am MG seronegative and MUSK neg.

I have two nodules in my left lung. One is 6mm. One is 3 mm. That combined with my myasthenic condition really does bring to mind small cell carcinoma. I am going to try not to go down that road mentally until I go to the pulmonologist.

I have never smoked cigarettes.

From what I read it is called voltage-gated calcium channel antibodies (VGCC) for LEMS -Lambert-Eaton myasthenic syndrome. I think there is only 1 set of antibodies, unlike MG.

Best of luck,
kathie

Here is a link that talks about the different types of VGCC antibodies and the significance in LEMS. I hope this helps.
kathie

http://www.ncbi.nlm.nih.gov/pubmed/9443463.

Good info, Kathie. Thanks.

Celeste, Have you ever been exposed to asbestos?

Given your diagnosis of MG, I would've thought your primary doctor would have done the LEMS blood test right away.

http://mda.org/disease/lambert-eaton...es-inheritance

http://www.labome.org/topics/disease...rome-5922.html

http://neuromuscular.wustl.edu/synmg.html

What about radon? Do you know if you have radon in your home? Testing for it is easy.

Has anyone said the "C" word yet?

I can only imagine the intense fear that goes with the possibility of cancer and all that entails. It's very hard to deal with an unknown like this. As if you need one more thing going on.

The body can heal and get rid of cancers. They also have new technologies where they use lasers to target just the area involved.

Mayo did a study a few years ago that involved B12 and cancer. B12 often goes straight to cancer to try to heal it. So, if you do have cancer, it's also possible that your B12 could be depleted. Cancer is an area where nutrition has been proven to be beneficial.

Again, I'm sorry you're dealing with this. Hang in there, ok?

:hug:
Annie

The "C" word has been lightly tiptoed around. If I have it, we'll just have to deal with it. At least the masses are small.

Small? They're tiny--whatever they are. Thank goodness! Hope you get quick resolution of this so you can get on with things!

Chin up! You are doing great!

I am thinking that even if it is something bad, the size should make it easy to fix.

Glad you found a concrete culprit, Celeste.
Crossing fingers for speedy resolutions and sending huge hugs from across the Atlantic.

Anacrusis