Went to the ER in London; they did a bunch of neuro tests and scans. The cause if the symptoms is nit in obvious yet, and they recommended flying home to start this diag process with docs who are already familiar with ne.

Doing just that. Should be at our hospital in 6 hours.

Please do keep us updated, from what you wrote it "sounds" like MG but with your medical history only your Dr can say for sure. Keeping you in my thoughts.

Tom, with the way you are "attacking" this problem, I can sense that you are a "take charge" kind of guy. I hope that you will heed my following words. Diagnosing MG takes T-I-M-E -- even with doctors who "know" you. IF you are antibody positive (if your bloodwork shows signs of the antibodies that cause MG), it can take WEEKS to get the results. If you are negative to the MOST common test, AChR, they will likely run the MuSK test -- and it can take a MONTH or so to get the results. Sure, they can do an EMG, an SFEMG, a Tensilon test -- but, most likely NO ONE is going to say "yes, you have MG" until all of the blood work is back. And IF you are SERO-NEGATIVE (no antibodies show up in either test) -- get ready for a LONG HAUL. You can STILL have MG without ANY antibodies showing up -- but, that is the time when docs really HESITATE to call it MG. Look around in this forum -- read the posts -- you will see how frustrated some of our members are -- and RIGHTLY so!!

So, get yourself prepared. Read -- study -- KNOW your subject. Most of US know as MUCH or MORE than most neuros about MG. No BRAG -- just FACT. We have HAD to learn -- to survive.

As others have said -- I'm hoping that you do NOT have MG!!!! But, IF you do, we will be here to help!!

Back at hometown now, and admitted to the hospital.

MRI shows enhancement all over the cranial nerves. Trying to figure out if this is a CNS relapse of my lymphoma, mastoiditis, myasthenia gravis, or anything else.

Please pray it isn't a relapse. Please!

Tom,

Relieved that you are home and with the medical folks who are most familiar with your history. You will be in everyone's thoughts and prayers. Please let us know how you are progressing as you are able.

Sue

I'm praying!!!!

(((HUGS)))

I am so happy you are in good hands. I'll be keeping you in my thoughts & prayers.

Hugs,
Pat

Tom,

glad you are home, you are in my thoughts,
take care
Kate

Had massive cranial nerve enhancement and CSF was positive for lymphoma. Looks like it's not MG, and that I get to have more chemotherapy.

Thanks for the advice everyone!

I am so sorry. I know this is a tough cancer and I hope you can beat it.

If you do have it invading your thymus, however, you could possibly have "secondary" MG due to that. So at least let your doctors be aware of that, okay?

I'll send lots of good thoughts your way. I really hope you overcome this setback.


Annie

This may or may not be relevant but I had to mention it. Getting tested for celiac disease may be worth while. If you have it, maybe it would help to stop having gluten.

http://www.celiac.com/categories/Cel...eliac-Disease/

http://www.lymphomainfo.net/conditions/celiac.html