I had my Hopkins appoint today. The neuro doesn't think I have MG--they don't know what I have..but nothing straight forward of course. The SFEMG and posititive modulating Abs are non-specific b/c I also have a bunch of other autoimmune and inflammatory markers that are elevated.

They drew a boat load of blood and now I have to see their pulmonary and GI docs..I don't know how long that will take. My J-tube has been clogging or pulling out ~every 2 weeks and my docs down here want me to get one surgically placed...I was hoping to have a solution to this swallowing crap before it came to that.

I'm totally frustrated..and apparently there is nothing that I can do.

Big moose size hugs to you.
Sorry about the news. I'm hoping the doc will be brave enough and aggressive enough to follow up and help you on this.

Oh, Eeyore, I'm so sorry! I know you were hoping for something DEFINATE - Why can't the docs figure this out? I can't even imagine what you are feeling right now, but I am so sorry. Know that you are in my thoughts and prayers Erin

Hi Eeyore,

consideryourself
How very frustrating for you, I really truly do hope they find something with all the blood they took.
Take care, and keep comming back here!!
redtail

Eeyore,

I am sorry. Please keep the faith and stay strong. I will continue to pray for you (for answers & improved health).

Nancy Lee

I am so sorry you may need to start all over. Gosh, it seems life just keeps taking turns. Maybe you will find out it's something that can be managed better. I pray this is the case.

Hey there!I just wanted to drop you a quick note and see how you are today/........I cannot imagine how frustrated you must be and I am so sorry for you. Do the docs have ANY idea of what you have, if not MG? I just don't see why it's so hard to diagnose you and give you the medical treatment you deserve. I'm still inb the hospital - 5 days of plasmaphoresis and now 4 days if IV IG - I was pretty worn down - but I was thinking of you Take care and stay strong! Erin

So far it seems that the only consensus is that it is autoimmune..the current debate is CNS, muscle or some whole body syndrome or a mix of a few of these.

The neuro at Hopkins wants me to hold off on my regular IVIG b/c she thinks that the low dose I'm getting (0.6mg/kg) is not enough to do anything anyway. My past experiences with skipping doses has not been good---we'll see what happens this time

erinhermes--I'm sorry to hear you are still in the hospital..are you feeling any better?

Hey there!I was so glad to hear from you - I've been worried about you.......I truly cannot imagine how frustrated you must be right now, but please know that I think of you often (and pray for you). When do the docs expect ANY results from the lab work? Why can't they figure this out? I just don't understand...............I'm still @ the hospital - 5 days of plasmaphoresis and now 4 days of IV IG - I felt great yesterday afternoon, but am WIPED today, prolly b/c they never let me sleep here......they wake me up to give me xanax - crazy!!!!!!!! Hopefully I'll be home Tuesday. We'll see........

I'm sorry to hear that. I really hope they will be able to find out what exactly your illness is and how they can help you. Don't give up too much hope - this is just a setback on your way forward.