Quote:
Originally Posted by AnnieB3
Hi. I just saw your post in the "sticky" thread above. Wow, you've been through a lot!
I read this in Violet4941's post and wanted to put it here.
Have you had a chest CT done? Do you know the levels of your ACh Receptor Antibody test? Did you have that done? With such a high antistriated muscle antibody count, I was wondering if you might have a thymoma. Have they ruled that out?
Did they do a biopsy to confirm the bullous pemphigus? I was wondering because discoid lupus can present like that.
With the low T-cells, have they come up with any immuno therapy for you other than IVIG?
There are a lot of well-informed, supportive people here. It's a great place to share experiences!
Annie
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Annie, I am not sure how this "reply" works on this board. Hope this is going to work!!!!
Anyway, my Ach receptor antibody is negative and has been everytime they check it. I have had thyoma ruled out also. O have had many chest x-rays done and numerous chest Cat scans. I go to an immunologist who is a pediatric oncologist pathologist. He is also involved in international immunological studies and has worked on bone marrow transplant teams. He is very knowledgeable.
Anyway, I had the Bullous Pemphigoid biopsied in 2002 by my Dermatopathologist. I had an upper arm that was about 4+ inches in diameter and red hot when I saw him. I really suffered with that bugger. He also cultured the 12 cm bullae on the back of my arm and I had bacterial and fungal infection.
I have done quite well on the IVIG and my MG is so much better. I had a terrible summer this year and when it cooled off I was much improved in 3 days. My neuro had upped my prednisone for a few months and I am in the midst of tapering off some. I have been on Prednisone 10 mgm every other day for about 6 years. My neuro likes to keep me on it so that I have a little protection for these bad times. I think she is right!!!
I saw where someone asked how you would know when you were having a crisis. Now, you need to realize that I have dealt with my condition for many years and researched a whole lot. Also, my neuro and I have a great relationship and she is a woman. She told me that when I woke up in ER on a table looking at the lights on the ceiling with a tube in my mouth I would know I had a crisis.
I took that with a grain of salt and a laugh as I knew what she meant. Crisis can happen fast and unexpectantly and we better be on our toes.
Anyway, I am looking forward to visiting here and taking opportunity of all the information.
I should add that all of my autoimmune blood studies are pretty high and my doc is amazed that I am doing as well as I am. Some people have relatively low titers and can be very, very sick. Thanks 69gto73