Undiagnosed with questions

[pberggren1]

I am sure anyone can go to the Cleveland Clinic. It is world renowned.

[elephant]

Trudy, no you don't have to have a diagnosis of WG, If you doctors local Rhuemy suspect WG or other autoimmune disease, it is good to see a specialist to get a second opinion. Just need to have your doctors fax your records ( Ct scans, labs or surgical reports..ect) to the doctor that you want to see at Cleveland Clinic. Once you make an appointment they will go over it with you.

[Sangye]

Trudy, why did they pre-medicate you for the CT with contrast? Have you had an allergic reaction to it before, or an allergy that worried them? Otherwise I've never heard of that. Benadryl is no big deal, but you should use caution getting huge doses of pred like that unless it's necessary.

[Trudy]

I'll try to make a long story short. Since early childhood I have had chronic problems (anemia, asthma, kidney, allergies). At 41 after my last child was born I had severe mobility problems. It took 8 years for a diagnosis of SLE. Six years later my daughter was diagnosed with SLE. We share same blood type (A-), have most of the same allergies, and similar reactions to drugs. Most chemicals give me trouble, even simple things like food coloring. Her initial bout with SLE was triggered by dye during CT scan; they thought she had appendicitis which was really an ovarian cyst. So after a year of different organs being inflamed and bad labs, doc decided it might be the lesser of two evils. We both go to the same lupus specialist.

[Sangye]

Yes, that makes sense then. I'm so sorry for all that you and your daughter have gone through.

[Thakator]

Hi Trudy,
While this response is too late to help you with your original question regarding the potential consequences of having to submit to the dye accompanying your MRI, I will make it anyway for the sake of other readers who may be wondering - - and for your sake inasmuch as you may likely be asked to undergo other scans along the way.
One of the responders mentioned that the MRI dye is not the same as that which is customarily used in a CT scan. That's true and the difference can be significant. For the MRI, it is usually Gadolinium, for a nuclear dye test and scan it is usually MIBG and for CT scans it is usually Isovue 300 (30%iodine). Please keep in mind that I say "usually"; your doctor can request differnt dyes. I now get only the Gadolinium with CT scans because of my having a bad experience with the Isovue.
When I went for my first CT scan, I was told that there needed to be an IV contrast and was asked if I were allergic to anything; never had been so told them to go ahead. Bad move - - I mmediately went into full blown anaphylactic shock, stopped breathing and, were it not for the fact that the scan room was two doors down the hall from the ER, may very well have not survived (was told afterwords that I had only a few seconds to go before being revived). That was on the Isovue. I've had no problems with the other types of dye (including the nuclear stuff), each of which I've taken since that troublesome first experience.
Hope that this might be of help to you in the future and that you are doing well. Ron