Would it help my case to.............

[Islandgirl64]

Hi everyone - I'm new here & have a quick question. But first some background info on me - I have had IC for about 1 1/2 yrs. now & filed for disability last Feb. I am now waiting to find out when I will get my ALJ hearing. I also have fibromyalgia, advanced degenerative CMC joint arthritis in both thumb joints, severe nerve damage in my groin, migraines, back pain & just had a sleep study done because the Dr. thinks I have narcolepsy. So I've got a few things going on here.
My question is this - would it help my case to have a couple of instillations done ? I have never had, nor has my Dr. ever reccomended me to get one done. I take Elmiron 3x a day for it but I do get bad flares here & there. I know it looks good if you have tried everything. But I have so many things wrong with me that I'm wondering if I shouldnt bother ??
OK, I said I would make this short, Lol
I would appreciate any input any of you might have very much. Thanks !

Susan

[naturetree]

Hi. If you are talking about DMSO instillations, I would not recommend having them. My DMSO treatments have made me worse PERMANENTLY. I would read the messages on this site under Treatments/Instillations/DMSO. People are now saying that it is safer if the percent of the dmso in the instillation is less than 25%. I know people have been helped by it, but I have spoken to several others whose symptoms were worsened because of dmso--I wouldn't try it.

I think you have enough problems that will help your SSDI case. I too am waiting for a hearing. I will have to contact a congressperson.

[ICNDonna]

If the elmiron isn't working and if you are having a lot of pain, it could be a good idea for you to think of having some bladder instillations. There are several different kids of instillations --- when I was first diagnosed 28 years ago, silver nitrate was usually used. It isn't used much any more, but it did help me. I later had steroid instillations and heparin. All seemed to help.

But --- the one that has helped me most is DMSO. I have always a solution instilled that is slightly less than 25% DMSO, which is considered a safe level. I have to admit that my first few instillations were very painful. In fact, I almost stopped them because of the pain level --- then one night I slept the entire night without even one bathroom trip. That was enough to convince me to continue. Now I have a little discomfort on DMSO day, but the rest of the time I do very well. I have been on a once a month DMSO schedule for several years now.

Like other treatments for IC, neither DMSO or Elmiron works for everyone.

Sending healing thoughts,
Donna