Not Dx'ed yet; Traveling Abroad
 

Hi there,

I recently finished treatment for lymphoma, and we're on a trip through Europe to celebrate. For the last 5 days or so I've noticed some symptoms in myself that sound MGish:

- left eyelid drooping
- left eye wandering, causing double-vision
- trouble swallowing
- speech oddities (excessively nasal sometimes)
- limb weakness, especially in my right tricep

We've got a little under a week until we get home. Should I be trying to go to an ER abroad ASAP or I'd the wait OK?

tommusic, you are NOT going to like what I have to say. ER docs do not usually know much, if anything, about MG. MG is not a disorder that is easily diagnosed OR treated. You don't just get a pill or shot and then go merrily on your way.

I shudder to think what "might" happen to you if you DO have MG and you start having problems AND need medical care in a strange city.

I am NOT a doctor -- we do have a doctor who is a member -- she is NOT a neuro -- but, she has MG herself. Maybe she will see your post and give advice, too.

My advice -- and, please note that this is ADVICE -- OPINION. Do NOT PUSH yourself -- get enough rest every night -- eat wisely and at regular intervals -- stay hydrated -- do not get too hot or too cold -- stay AWAY from sick people (use antibacterial wipes/sanitizer if possible) -- and try not to get stressed or upset about anything. IF you DO have MG, then this "might" keep you from going "over the edge" until you can get home and get an appointment with a neurologist.

BTW, I would have said that this ALSO sounded like a one-sided stroke (left side) -- but, then you threw in your right arm weakness.

If you think that this MIGHT still be a stroke -- or aneurysm -- or something else -- DO, by ALL means, GO to an ER.

These symptoms are NOT "locked in" to MG.

Thanks Jana!

This trip has been a stressful one; I had some really bad ear pain that was dx'ed as being from congestion, and that kept my from getting much sleep at all for a period of four days. If MG is it, the stress probably got it revved up.

I'm glad to see you confirm that an ER doc is not going to be the best to diagnose this. I just feel antsy and want to get started fixing me again.

I've written to my oncologist back home to let him know what's going on, and to get a recommendation for a neurologist at the dame hosptial. I'll be heading into Urgent Care to get the process started as soon as our flight arrives.

We beat cancer. I'm supposed to be healthy now. Gotta work this out!

Sounds like you are in good hands with a doc who cares.

This is an awesome group of people -- they will be able to answer just about any question you have -- even before you are diagnosed. Keep us posted.

Try to enjoy the rest of your trip. Best wishes!!

Hi Tom...welcome to group!

A couple of other suggestions. There are some things that can make MG worse that it wouldn't hurt to avoid until you get to your doc.

No alcohol, muscle relaxers, and check out whatever meds (prescribed or over the counter) that you are taking for the ear infection/congestion since some meds are contraindicated with MG. I will try to find the link for this and post later unless someone beats me to it!!

Also, try applying ice to your eye for a few minutes to see if the drooping improves. This is a 'cheap test' for the liklihood of MG. (With MG, muscle tone can improve for a bit after icing.)

Keep us posted - - and hope all stays static until you get home. And CONGRATS on beating your lymphoma!!

Sue

Hey Tom,

Welcome to the group! What a great doctor you have and that's wonderful you beat the cancer. Hang in there and let know how you make out.;)

Hugs,
Pat

hope you don't have MG, and those are just some late side effects of chemo, that will gradually improve. I have seen that, albeit quite uncommon, afer treatment for lymphoma.

either way, it is a good idea to rest as much as possible for now, and figure it all out when you are back, unless you are experiencing significant breathing or swallowing difficulties, in which case you should probably go to an ER.

alice

I completely agree, you need to go to the ER. Whenever you have symptoms like this, they are SERIOUS. You can't tell if you've had a stroke or something else. We certainly can't tell either.

It's possible, since you had lymphoma, that the cancer could be in your thymus gland, causing a thymoma. Some people with a thymoma can have symptoms of MG. When the thymoma is removed, the MG can go away.

Again, go to the ER. I wouldn't even hesitate. And I've been on a plane to go overseas with MG. Not fun at all - and I KNEW what was wrong with me and was stable. What's more important? A trip or being alive?

I hope you get the care you need.

Annie

Hi Tom,

welcome, I hope its not MG, and it looks like everyone has done an admiral job filling you in and giving you great advice!!!!, which is good cos my fingers don't feel like typing.
I hope things start improving for you and you can enjoy the rest of your holiday
take care
Kate

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.

:hug:
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

Tom

sorry you have to have more chemo.
You are still in my thoughts as you go through all you have to.
take care
Kate

Hi Tom
 

Sorry I haven't posted until now.

I hope you enjoyed your visit to my country, even if you did pay a visit to the NHS!

I am so sorry that you need to have more chemo, be brave and strong.

Sending lots of positive energy your way.

Love
Rach

losing one battle doesn't mean that you have lost the war.

hope you will be able to celebrate next christmas in London, without having to meet the NHS, celebrating your remission.

best,

alice

Tom,

I was very sorry to learn you will have to undertake more chemo. Pls let us know how you are progressing and know that you are in my thoughts.

Sue

We had a neuro-oncologist look at my MRI yesterday and it was clear to her that these effects are due to more lymphoma.

We're starting high-dose systemic methotrexate and intrathecal cytarabine today. Yes, chemotherapy on Christmas.

I appreciate everyone's advice. I might update here occassionally a few more times to share news, but since this isn't actually MG-related I'll keep it to a minimum.

Tom,

Again I am so sorry. You beat it once and you can beat it again. Would love hearing from you with some updates. I will continue to keep you in my thoughts & Prayers. Everyone here is pulling for you. Take care.;)

Hugs,
Pat