Myasthenia Gravis

[tomas2729]

I went to the neurologist today to follow up on some blood work and he told me that I have myasthenia gravis. He explained it to me in layman's terms.....  Is anyone familiar with this? Any info you might be able to give would be much appreciated.


Tom

[maxthecat43]

I'm so sorry Tom!  Waiting is so awful!!  We are all here for you, (and your family too!  This must be scaring your wife to death!)  

I'm sending out gentle hugs to you, and your whole family, okay?

Tammy

[tomas2729]

So I went to the doctor today to follow up on my CT scan. The radiologist sent back conflicting information. I definately have stuff there that is abnormal but the radiologist doesn't think it has anything to do with the Thymus gland. My nuerologist needs to go over to the hospital and see the scan results himself. So..... it's more of the waiting game.

He did tell me that I will have to have my chest cut open and have all of the abnormalities removed (rib crack and all....) Not sure when this is going to go down yet. All I know is I'm not looking forward to it.

Tom

[maxthecat43]

It is perfectly healthy to have a fit over this! But perhaps the Bible study will help you find some peace.  It always does for me. In fact, I have been freaking out a little today too, so I will do some of my own Bible study.  Thank you for the reminder.

Tammy

[tomas2729]

I had no idea that this was coming.... Initially we thought that my legs were acting up because of MS. My neurologist gave me an EMG, ordered blood work and started my on Ampyra. Within a week my legs were doing way better but not all the way.... My blood work came back and the rest is history. I have MG.

I am trying not to throw a fit today but I think I'm about to lose it. I better do it quick I guess because I have a Bible study to teach tonight. Thanks guys for being there. It means a lot.

Tom

[doublevision1]

Oh, wow, that is a lot more than one person should have to deal with.  So you will continue with your DMD which I think you said was Copaxone?  Strange I just recently came across a newer article that I think talked about interferon being a problem for those with MG.  I might have that wrong so I will try to go back and find it.  In any event not a problem for you I you're on Copaxone but good to know I guess.  How are you doing with all of this?  I really am blown away by the dual dx.  We know MS doesn't immunize us from anything, but its rare I think to hear about these conditions together.  If I come across anything literature on a dual MS/MG dx I will be sure to pass it on to you, Tom.

[maxthecat43]

I'm so sorry to hear about the new dx!  Did you previously have any notion that you would be getting this diagnosis?  I don't know anything about it yet...  But I will be looking into this evening.

[tomas2729]

Oh, I for sure have MS. There is no doubt about that. I have an elvated ocb level in my spinal fluid and many lesions on my c-spine and brain. My MS treatment medication seems to have put all of my other symtoms in remission at this point.

MG is just another awesome additon.... I will not be going anywhere :)  

Thanks for the links for info. I appreciate it so much.

Tom

[doublevision1]

....and here's a very informative Health Page in the Autoimmune community.

http://www.medhelp.org/tags/health_page/1059/autoimmune/Myasthenia-Gravis-FAQs?hp_id=811

[doublevision1]

I found a couple of older posts on MG  which provide some helpful info from other members.  There are more you can find if you use myasthenia gravis as keywords in a search of this community.

http://www.medhelp.org/posts/Multiple-Sclerosis/Does-anyone-know-anything-about-Myasthenia-Gravis/show/496340

http://www.medhelp.org/posts/Multiple-Sclerosis/My-Experience-With-Myasthenia-Gravis/show/1492542

Please know that you are always welcome in the MS community here and we don't like it when members leave, lol, even when it turns out they do not have MS.  We always have plenty to learn from each other even if we are battling different conditions.  And there are others in limboland and others that will come after that will be dx'ed with MG who will look to folks like you for info and support.  So please, stick around!  :-)

[doublevision1]

One of my docs initially thought I had it so I learned a bit about it.  Have to head out for appts but will follow up with you later.  Don't know how much your doc got into today, but there ARE treatments for MG.