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Talked to rheumie about porphyria and IC and reaction to pred

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Posted 6/26/2007 11:13 PM (GMT 0)
Well,

I talked to rheumie about the chronic bladder pain, could I have porphyria, problem with sunlight, and the reaction to my last pred. shot.  I also locked my keys in the car while it was running because I was busy thinking about how bad my memory was because I'd just forgotten something and I was really stressed out.  They were nice at the appt and called and helped me with my car but I cried through my appt. and I think he thinks I'm nuts now. I just don't understand what is going on with my body.  He took out like seven tubes of blood and did a urine.  He wants me to go bac to the urologist and get IC ruled out or find out if I have it.  He doesn't want me to take cellcept or any other stuff because he doesn't think it will help my mild sjogrens and he's not convinced that my organ involvement and autoimmune endocrine and stuff is related.  I think he just wants to be sure.  Hes a good caring doctor and he examined me and all. I'm just a mess.  I truly wish that they would find out what is wrong.  all my tests always come out ok or weird, its so frustrating.  I'm sorry to unload this.  I'm just frustrated and tired of just getting worse and worse and no one can tell me why.  And they keep telling me, but you're not that sick.

Posted 6/26/2007 11:21 PM (GMT 0)
Marji, I'm so sorry you've had such a lousy day and that you're not getting any results from the doctors. If you're not that sick, then how do they explain the lengthy list of dx's and meds on your signature line. You poor thing - when I read about you locking your keys in your car while it was running and crying all through your appointment, I felt so bad for you. I also got flushed because it's that sort of thing that gives me hot flashes. I would have been sweating in the snow.

I hope you can get some rest tonight and that tomorrow is better day for you. And keep pounding the pavement for answers. I'm on your side!

Pat
Posted 6/27/2007 3:49 AM (GMT 0)
Marji,

I am so sorry you had such a terrible day it is horrible when you feel so lousy and the drs seem to have no answers....I agree with Pat if your not that sick than how come you have that list of Dx and list of meds to boot I am rather new to this forum but I have found everyone to be so supportive so unload as much as you need to.....I hope you have a restfull sleep and that tomorrow is a better day keep in touch so we know how you are doing.....

God's blessings to you!

Sheryl
Posted 6/27/2007 4:11 AM (GMT 0)
Hi,
Thanks so much Patty and Sheryl for your kind replies. This is such a wellworn path. I'm doing a bit better after pain meds and nausea medicine. Each doctor wants to compartmentalize each problem and shirk responsibility for them. I should be happy my rheumie is doing so much blood work and a urine. And he made the nurse get me tissues the minute I started crying, I don't think he likes to see someone upset, he is a kind man. It's just that he's not willing to lump all this stuff together, probably because he feels it might mask another problem. It's just so hard for me to deal with all of it as a bunch of little conditions that just keep accruing as my general health and feeling of well-being go downhill. Can it just all be coincidence? I know you have all probably gone through this before. It's like we keep going round and round and I'm so tired I want to give up and go to the mental hospital and forget about everything. I really wish I was just nuts, I wish psych meds would make my pigment come back, make my bladder not hurt, and my neck get better and everything else. If only I could heal myself with positive thinking and getting my mind off things. Wouldn't it be nice?
Posted 6/27/2007 11:46 AM (GMT 0)
Oh Marji, I'm so sorry you are having such a rough time. It is so discouraging when docs can't even figure it out. Don't feel bad about crying, not all people think we are crazy. I also understand about all the other conditions & it is enough to drive someone MAD. I sometimes wonder if yrs ago before docs understood this disease if it was not all lumped off as a mental disease. Just know I'm right there with you. I REALLY feel crazy. Before I was dx'ed, after yrs of you just need an anti-d I was really worried I was crazy. Hang in there!
Posted 6/27/2007 3:18 PM (GMT 0)
Marji, I am really sorry you are going through this. I really hope you get some answers when you labs come back. Hang in there and take care.
Posted 6/27/2007 6:09 PM (GMT 0)
Hey Margi,

I am sorry you are having a rough time with all of this. I know i went through 3 years before they would finally test for Porphyria and now that they have there is no question that I have the disease. Did they run the test for you? Also if the redness is not there when you go in make sure to take pictures so they can see how bad it gets for you. Also a dermatologist may be another route to try to help you as well. Keep us informed and still stay out of the sun as much as possible. Also keep a journal of all you do daily, nap, pain levels and which body part, eating, every time you throw up, etc.

Love always,
Leta :-)
Posted 6/27/2007 6:59 PM (GMT 0)
Thanks bkhhhh, hippi, leta. Your thoughts and suggestions mean so much to me. My doc keeps asking me if I get a rash and I told him "no, it just gets red and burns" and he said "everyone's skin gets red and burns in the sun" and I said, "not the minute you walk outside, this is different, it even burns through my clothes." I don't get blisters or anything, I got some hyperpigmented, graybrown freckling moving in on the sides of my face just below my eyes and it was peeling and it happened from being outside. Also, my hairline is growing into my eyebrows, but it's blond and fine so you can't see it so well. I don't know, could just be the steroids or getting older. What kind of rash do you get Leta? Mine looks like instant sunburn and that is all. Sometimes the sun doesn't botherme so much and I don't get it. But lately, I'm too nauseasus to go out. I got phenergen and he wants me to open some blinds, but I don't want to. Leta, let me know about the rash. I looked at some of the web pictures and there is no way that I have that type of rash, but I do have loss of pigment and hyperpigment, though no blisters or anything. I have really thick skin and a tendency to scar.Thanks again, and Leta, if you could let me know about the rash, does it always blister? When I went in to the rheumie, I was red from hair down to upper waist, like flushed or something.
Posted 6/27/2007 8:32 PM (GMT 0)
hey marji,

That is your rash, hyperpigmentation, so take a picture of it as soon as possible, and if you have lupus he knows better than to tell you to open blinds anyway. I get three kinds of rashes, but I do turn hyper red and blister a bit, sometimes just itchy red and sometimes looks like a fever rash. Hope this helps.

Leta
Posted 6/27/2007 9:35 PM (GMT 0)
So that's what that is. The derm tried to tell me that was my natural color and I'm definitely not that dark, even in my tan areas, besides it's grayish blackish brown, not a natural pigment color for any race, ashen. I also have it in areas where I don't get sun and in tanned areas, where it stands out. Thanks Leta. I need to do all body pictures for the re-pigment. The sun just makes me really red and it does itch like crazy sometimes, sometimes just red and burns. Thanks so much, Leta. Maybe the urine was for the porphyria and some of the blood. I hope so. Thanks again, you're really helping me.
Posted 6/27/2007 9:56 PM (GMT 0)
hey cured,

Just hang in there and keep being persistant. Another thing to note is your urine color too during episodes and not during episodes. As soon as you are the redest, take the pictures and head to the doctor. If they test your urine it has to be in an amber jar covered in foil and cannot be exposed to light. Hang in there and I will answer any questions as I can, I have lived this way for 3 years. It is not an easy adjustment.

Leta
Posted 6/27/2007 10:38 PM (GMT 0)
Does sunlight through the windows bother you? I have no trees around my house and I don't even like the blinds open and am not a big fan of bright overhead lights. I don't know whether it is my eyes or what. It just makes me sick to my stomach. I feel better in a darker room. They put my urine in the plain old clear plastic cup and had me leave it in the john. I guess they aren't doing anything special. It wasn't very dark, just more yellow than red, but it has been very red in the recent past. I've been drinking a lot of plain water because of my ut problems.
Posted 6/28/2007 5:51 AM (GMT 0)
Marji,

I hope that this will be the beginning of getting to the bottom of a lot of these problems you've been having for so long.

I know that with some of the more unusual diseases, some doctors will consult with a larger facility that may have more experience with it. Maybe your doctor would be open to doing that if you could get to one for an initial workup or something. Just a thought...I know it's hard. Maybe he's willing to learn about it on his own! Keep us posted on your lab results.

xoxo emmie
Posted 6/28/2007 8:56 AM (GMT 0)
Hey cured,

Sounds like he is running a urine test to check for the uti, if it is red could be blood in the urine from the infection. I know when I am in the sun, my urine turns brown, from iron leaking from Porphyria. I do not like light. I can tolerate it but not well. I use sunglasses, baseball hats and I feel nauseated. I literally live in the dark. I burn through windows and I have my car windows tinted black due to medical. I turn red, itch, vomit, migraines, pain, neuropathy, rapid heartbeat, anxiety, constipation or sudden bowel movements, severe pain, etc during my episodes if in the sun. If you keep thinking of stuff holler.

Leta
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