worry about BCG...

[LM]

Hi everyone. I am now (more)discouraged and need to ask some questions. I have been having unusual pains in my body and the doctors have yet to find the source. I am taking something for the pain which has made it tolerable but i'm still scared that something systemic is going on. It is not fibromyalgia or anything like that. I think my blood was normal but I'm still afraid this is the beginning of some autoimmune disease or something. Anyway now that that pain is somewhat under control i need to focus on what i'm going to do about the still-out-of-control bladder problem. I have been to a few specialists and the one who seemed to know the most said BCG would be good so i was going to do it months ago but kept having to postpone because of vaginal infections...and fear of catheters b/c of it. But now that i have this new problem with the pain, I was thinking about autoimmune disease in general and looked into it a little, and basically i found that they don't know what causes autoimmune diseases but researchers feel it could be "triggered" by a virus, bacterium, etc....so then i started thinking about BCG and how this is a bacterium so perhaps there is a risk that it could cause an autoimmune disease in me (something which i had never really been concerned about until this pain started and i realized how scary it is to feel such systemic pain, and learned about how devastating some of these diseases are). So, probably in an attempt to ease my worries, i looked it up to see if BCG could cause anything like this and i found studies that said it could! Now i'm disappointed, as this option had given me some hope. I am no doctor so i don't know what it all means but it seems to make sense to me...I brought it up to my family doc on Friday and he was like "hm...that is interesting" but he said he understands it's pretty innocuous and has been used for many years..etc. and was reassuring, but now I don't know. Maybe i am just thinking too much here. Again, this worry would never have entered my mind had it not been for this new problem i'm having. Has anyone who has had BCG discussed this with their doctors? I thought i would try asking here although i assume most people haven't thought about it like i hadn't...thanks in advance, L


[This message has been edited by LM (edited 10-01-2000).]

[Nancy B]

Hi,

I remember how scary it was before I had BCG. Also, my body has always seemed to thrive on auto-immune stuff. Never colds or flu. That can be frustrating. Anyway, I don't have a good answer for you. I do know that my urologist is at a big teaching hospital and I asked questions, especially to the nurses. They had good info. By the way, I do think that the BCG has resulted in more hair-trigger asthma and allergies to plant life. I have had both for years but now suddenly I react quicker. I figured it had to do with my immune system being a bit more sensitive.

Good luck. I would not want to re-live that time in my life when I was deciding what to do. My heart goes out to you.

Nancy Baker

[This message has been edited by Nancy B (edited 10-03-2000).]

[Nancy B]

LM,

How are you? I was just catching up and re-read your original post.

Nancy Baker

[LM]

Originally posted by Nancy B:
LM,

How are you? I was just catching up and re-read your original post.

Nancy Baker

Nancy,
Thanks for asking. I'm still having quite a few problems, in addition to the IC, which are tolerable now (because of medication I'm taking) but i still don't know what is causing them, and don't know how to proceed. As far as the IC, I had a cysto last week and i'm confused about the results and won't be able to speak to my uro for a few weeks, but i'm getting the impression my problem is more nerve-related rather than typical IC so now fear that any treatment aimed at the bladder lining won't help me. I'm terrified actually I'll let you know. Glad to know you're continuing to feel well, L

[Nancy B]

Originally posted by LM:
Nancy,
As far as the IC, I had a cysto last week and i'm confused about the results and won't be able to speak to my uro for a few weeks, but i'm getting the impression my problem is more nerve-related rather than typical IC so now fear that any treatment aimed at the bladder lining won't help me. I'm terrified actually I'll let you know. Glad to know you're continuing to feel well, L

Hi,

Was it a hydrodistension or cysto? One day a time, huh? Sorry it is difficult now.

Nancy Baker