[Nicknerd]

Hey guys,

Just wanted to let you know what the results were for my tumor....I got them a bit early because I was sorta on my way to a crisis...I called the hospital where I had my surgery to let my surgeon know that I was having major problems eating and talking again (but worse than before)...I ended up speaking with a resident thoracic surgeon on the phone who told me to come to the hospital right away...My FVC was totally fine (I think almost 100%), but they were shocked by how bad my voice was...I ended up being admitted....again...argh...

The hospital where I'm staying is a teaching hospital, so I ended up seeing like 3-teams of doctors plus residents....I'm kinda a shy person, so this was overwhelming :$...Anyway, the head neurologist decided that they shouldn't give me plasmapheresis again because it's too expensive and my breathing's fine (he made this decision without actually seeing me) even though the neurology resident truly believed I should get it as well as the thoracic surgeon on call...Anyway, I ended up seeing that bigwhig yesterday(the head neurologist) and he agreed that I needed it again, but that I'd have to start taking prednisone (no!!!), which I really don't want to take for a number of very good reasons (not necessarilly the obvious)...

So anyway, I had a plasma exchange today...it didn't really help this time (usually I start to notice a difference right away)...We'll see how things go...Hopefully, things will improve..

Now the tumor business...I found out that it's an AB stage 1 tumor...The doc. said that this is great news, and that I don't need to have radiation (thank the lord)...I asked if it was benign, he said not necessarilly, but my survival rate is 90% and I really shouldn't worry about it ever coming back...phew...

Two interesting things happened...The nurse who did my FVC turns out to have a sister with Myasthenia gravis, who had the typical eye weakness but also extreme bulbar speech, worse than mine...He said that after she had her thymectomy, she took one medication that put her into remission and she's doing awesome now, 6-years later....Another nurse I had had Myasthenia Gravis with a thymoma at the same stage as mine two years ago...She also did pretty badly 1-week after the surgery (like me), but is now in remission...You can't tell that she has it at all! She had a plasma exchange, was put on prednisone, tapered off, and is now on Imuran...She said that the only bad things that have happened since her ordeal two years ago, is that she got shingles (from the imuran, I'm guessing) and she gets a bit fatigued at night...I'll take the fatigue, yes please, but spare me the shingles! lol..

Anyway, I feel hopeful seeing another MGer in the flesh who is doing great!

How are all of you guys doing?

ttys!
nicky

[Ckitty60]

Hi Nicknerd,
It's good to meet you. I have not checked in for a week or so - too tired. I knew you were going to have surgery and prayed for you. I hope you will be getting better soon. Remission is right around the corner. I hope you can get lots of rest for now. Take care.
ckitty

[Nicknerd]

Thanks so much, sweety! I'm hoping getting better is right around the corner too, just a bit scared of the prednisone...But I think I'll be okay....Thanks for the kind words!

Nicky

[suev]

Nicky, I have always believed in signs - - and I would say that you got some pretty terrific insights into your future from the folks whose experiences you just happened to be exposed to. I believe everything will be working out just fine for you.

Here's hoping the shingles part was just about letting you know how lucky you will be when you don't get them...lol.

Take care and keep us all posted.
Sue

[rach73]

I believe in fate and I believe that you were admitted to the hospital to meet those people who could share those stories with you. (obviously you were admitted for medical reasons- but the timing wow!).

I hope that you soon get over this hurdle and get into remission.

Its brilliant news that you dont need the radiation treatment.

Keep us all posted on how you get on.

Love
Rach x

[Tbarney]

Nicky, sorry you are back in the hospital. I too think it is great you were able to meet others with MG experiences who cold share their stories with you.

[Nicknerd]

Thanks, Tbarney, suev and Rach! It does suck a bit that I'm in the hospital...But I feel a bit safer here and like things are being taken care of better now that I'm here...I'm glad that they started me on prednisone....I was worried that I'd get all of the bad side-effects, but so far, so good...They wanted to monitor me while I'm taking prednisone to make sure things don't get bad, which again, makes me feel a lot safer...

I think it's so crazy that I came across these people, since MG is so rare...Maybe it's more common than we think, or maybe the stars aligned in such a way that allowed me to see that things can definately get a lot better!

The docs. are still perplexed as to why I'm always gasping for air while talking...My FVC is awesome, actually over 100%, and my saturation is usually 100% as well...I definately feel like I can't breathe often, though, especially when I'm talking for some reason...Hopefully, once the prednisone and plasma exchanges really set in, that'll improve...Just wondering, though...Do any of you guys feel like you have difficulty breathing when you're having slurred/nasal speech and/or difficulty swallowing, but it turns out that you FVC is fine? I came across on article in CHEST journal and was thinking of relaying it to my doctors, but I'm thinking they might get annoyed...Sometimes, I feel as though I come off as having too much information, or like I'm trying to one-up them...That head neurologist guy sarcastically asked me where I got my degree from when I said that I think it's good to get plasma exchange before starting prednisone :S...He's kinda cold, so I'm keeping my mouth shut from now on...

here's the link from the CHEST journal

http://www.chestjournal.org/content/109/2/400.full.pdf

Thanks, guys!

[Tbarney]

Nicky, it's too bad your doctors are like that. My neuro always encourages me to read and research MG and then share what I have discovered with him.

[maryec]

Nicky, Glad to see you are getting the help you need, & had some people there you could talk with about MG. Better you are in the hospital, than home right now ! Hope your treatment works for you, & you get feeling better soon.
Mary

[AnnieB3]

Nicky, Did they do MIP or MEP? Sometimes FVC can be completely normal but it's the MIP and MEP that totally suck. They SHOULD do those. During my crisis, my FEV/FVC went down, total lung capacity went down but didn't look horrid. My MIP and MEP, and arterial blood gas to a lesser degree, however, did not look good at all! The ABG can show hyperventilation, which does not mean you are anxious! That's what happens right before a crisis.

Oxygen stats fall late in the game with MG. Did they check your O2 stats while you were just sitting there or while you were walking? It makes a big difference. My pulmy always has me "go for a walk" with the oximeter on.

I'm sorry you are back in but glad the tumor was one where you don't have to have chemo, etc. I'd still get a 2nd opinion about that though. Always get a 2nd opinion on tumors. Get the slides sent to someone.

Make sure they do a D-Dimer to make sure you don't have a pulmonary embolism!! They may have already done that but it can make you "gasp for air" too.

I hope you are better very soon!!!

Annie