Back from Johns Hopkins
 

Just thought I would give you guys an update of what my Dr.'s plan is:


I had the SFEMG...needle in the forehead..not a pleasant experience. The doctor could automatically tell I had MG (They were a little skeptical because of the EMG that duke sent was a little blurry). He was fishing around in my forehead for about an hour to finally say..yeah I bet your seronegative as well, correct? I was pretty impressed. He was very good at what he did, and it impressed me that the results were there as I was laying on the table- it took Dr. Howard 3 weeks before he diagnosed me on his SFEMG.

Anyways- after the test my doctor came in to see me and just explained that last month my body did not absorb the Imuran as it was supposed to and the numbers went down again only 2 points though. She said once the MCV (Mean corpuscular volume) which is what they monitor for Imuran, reaches 100-105 I will be feeling much better. It was at 85 when we started 7 months ago and now is at 92, hopin for it to go up again soon.

I asked her about taking me off prednisone..she said I could slowly taper off of it yet my body still needs it as well as the IVIG as the Imuran works its way up.

She shot me down on the cytoxan procedure (reboot) because she said the two patients she has had with it didnt do that well, and Johns Hopkins has only done it twenty times on Auto Immune patients. She found it to be too risky for at 18 year old to try and maybe down the road when more studies have been done on it she would possibly consider- yet only after failing one more drug.

There is a new trial going on there as well- to any of you who would travel there it is for a new drug that would work within minutes after taking it, though you do have to be seropostive to do it...hense why I cant try it:(.


So ^^ Take advantage of that if you can..


Im doing pretty good- IVIG is setting in more, and I have it again memorial day weekend, yeeehaw.

Hope you all are doing well.

Thats good news Tyson! Looks like the one thing you really need is what most people lack ..... patience :wink:

Hang in there and give that Imuran a little more time to work.

Sounds like you are moving in the right direction and that's always a good thing.

Thanks for the update,
Shari

That's interesting! I had two "borderline" SFEMGs on my arms and legs, and then the same experience: needles in my face, and the doc could tell immediately it was MG. That's how I got diagnosed, since my symptoms aren't really typical (almost no eye involvement, for example).

I'm seronegative, too. So, I'm dying to know what it was about your SFEMG that made the doctor guess you were seronegative.

Abby

So glad everything went well at your appointment. Hope your Imuran titers rise soon - did they give you any idea how long it could be? Did they give you plan to step down on the pred...or are they wanting your Imuran titers to rise more before beginning to taper?

Sounds like your doc (and the others) are really on top of it all. Did you feel better about things afterwards?

Thx for the info Tyson, glad to hear you heading the right direction and it is good to sense the uplifted spirits in your words!
I am curious and hope to hear a few comments in regards to the steroid use for inflammation as I have had a sense of being warm, or inflamed, for several years now. Some days I have spells I sweat a lot and almost feel a bit feverish and wonder if this is a whole body response to inflammation caused by MG?
Hopefully not derailing your thread...
Respectfully,
Randy

Abby- that is very interesting..im not sure if they are using a new program now or what it is.

Sue- Thanks! They are starting to taper my prednisone down right now because I threatened I would go off it completely if she didnt...haha manipulation... I was going crazy:)

Randy- Not sure what you mean. I do also sometimes get that inflamed feeling and i hate it! Its horrible, so im sorry ur dealing with it. I sweat alot, alll the time on my feet and hands..and its not nervousness that does it...so im not sure if it is the pred?

Tyson,
Sorry to be a bit vague. Simply I was just wondering how many other MG sufferers have what seems to be related sweats? And if most due that must be associated perhaps with the internal inflammation generated by the mg I am guessing?
I have had spells off and on most of my life where I would sweat profusely and not doing anything that should have triggered such a deal - perhaps this explains it finally...:rolleyes:

Randy

Tyson I just noticed my hands have stopped sweating. It didn't occur to me till I read your post. I am not on Pred so I don't think that's it. It has been a month since my IVIG so I suspect that's what caused it. I carried around 3 paper towels just to keep my hands dry.
Mike