At my wits end, not RA??
#277843 - 08/10/06 08:16 AM
|
|
|
|
michele
Reged: 06/02/03
Posts: 6886
Loc: southeastern michigan
|
|
|
The health saga continues....I have been having awful headaches for over a month. Thought it might be the Imuran which I stopped last week. Monday night it was so bad, I laid in bed with an ice pack on my head and couldn't move. Tuesday was awful. By Wednesday, I couldn't even get out of bed. I called in and told my boss there was no why I could even drive to the office.
I finally got a hold of my new rheumy doc, the one I liked so much after 3 phone calls at 1pm yesterday. She was less than pleasant to me. She said that my ra antibody is negative and that she doesn't believe I have RA. She said I probably have Crohn's. She wouldn't listen to me when I tried to explain that I've always been C until they put me on all these drugs. She said to me "I can't help you." She said to go to a gastro person. I was so caught off guard that I couldn't ask the proper questions and she was very short with me. I hung up the phone crying.
I was so weak, I couldn't get off the couch. I called her office back trying to get my questions answered and the receptionist got an attitude with me saying you will have to ask the dr these things but I can't talk to her until my appt at the end of the month. The receptionist did call me back 2 hours later and said I'm supposed to continue taking all my medications even though I don't have ra. 
I got a hold of my internist this morning. She said she doubts I have crohn's because there were no white blood cells in my stool sample and the fact that the d didn't start until after I started all these horrible drugs.
She hasn't a clue whats wrong with me either. We agreed that I would taper off the steroids and I stopped all the other medications. I've been taking over 20 pills a day. I'm going to stay on the zoloft but pretty much stop everything else.
I just can't believe they haven't any idea whats wrong with me now. I'm thinking I might try to call the University of Mi and see about getting an appt there. I just don't know how much more I can take. Why can't they tell me whats wrong???????????
--------------------
Taking it one day at a time.....
Print
Remind Me
Notify Moderator
|
|
|
I can't believe it! How can they suddenly just change their mind about all what's wrong with you?!
I'm absolutely stunned. I have no advice as I'm totally out of my depth, and also have no idea how this works over there in the US, but if I were you I'd get ready to kick some serious ass - if someone wrongly diagnosed you with RA, and you've been on all these drugs since, that have probably messed you up in other ways, they have a hell of a case to answer.
But more importantly, who are you supposed to go to get answers? I'm guessing you've seen GIs before right? Wouldn't they have spotted on endoscopies and colonoscpies that you had Crohns? I have no idea what could be wrong, but someone must, surely??!!!  
I can't believe you're having to go through this on top of everything else, it's beyond belief. Sending MASSIVE hugs and every bit of positive energy I have!!  Keep us posted, and you know where I am if you want to rant or scream or swear or anything at all.
In absolute shock
--------------------
http://ibsblondie13.blogspot.com/
Print
Remind Me
Notify Moderator
|
|
|
Oh hon,
I'm so sorry. I don't even know what to say. I can't even imagine how frustrated you must feel. I'm thinking about you.
Hugs.
--------------------
Flipada - IBS-C "It's a gas, gas, gas"
**Lauren**
Print
Remind Me
Notify Moderator
|
|
|
I can't believe they haven't even got an idea what's going on and that they were so rude to you. OH, doctors! If there is another doc you can try, I'd do that. There has to be somebody who can help you.
--------------------
***********************
If you're not dead, you've still got time.
Print
Remind Me
Notify Moderator
|
Re: OHMYGOD!!
#277861 - 08/10/06 09:24 AM
|
|
|
|
|
michele
Reged: 06/02/03
Posts: 6886
Loc: southeastern michigan
|
|
|
Yes, absolute shock is my reaction as well. The rheumy says talk to the gastro guy. I have seen gastro people in the past but it has been many years since my last colonoscopy. However, the internist said she doesn't think its crohn's because of the lack of white blood cells in my stool and the fact that the d didn't start until I started on these medications.
Crohns can cause swelling in the joints and the eye problems I've been having but I don't think thats the problem. I have an appt with some gastro guy the end of the month just to be sure. Crohns wouldn't explain the miscarriages either.
I have no idea who I'm supposed to turn to for answers. I called the University of Mi Rheumotology Dept and they are faxing my internist papers to fill out. The docs there will review them and they will call me in about 2 weeks to let me know if there docs feel that I am worth of there time.
--------------------
Taking it one day at a time.....
Print
Remind Me
Notify Moderator
|
|
|
Hi Michele,
I too am absolutely stunned at this latest health news. Firstly I wonder why the new rhuemy wouldn't have tested your RA antibody first before prescribing the Imuran on top of everything else you're taking. Is there another form of arthritis you may have. Yes drug induced D definitely doesn't suggest Chrohn's or Ulcerative Colitis in my mind. You are right though that Chrohn's and Ulcerative Colitis can cause joint and eye problems but still it doesn't sound like you have either condition.
Is the RA antibody the same thing as the ANA test?
I really hope that a doctor can sort all of this out for you b/c it's just totally appalling to me that you've had to suffer so much at the hands of "bumbling" doctors who have misdiagnosed you and subjected you to serious drugs for apparently no reason.
Sending positive thoughts your way.
Jenn
Print
Remind Me
Notify Moderator
|
|
|
Michele-
I can't believe they would say that! You really need to go to U of M! I would recommend my rheumy but I just got a call from her office and she just had her baby and isn't due back until Nov. I know you can't wait that long. I hope they can get you in soon and figure out what is going on! Love and hugs!!
Print
Remind Me
Notify Moderator
|
Re: Update
#277888 - 08/10/06 10:36 AM
|
|
|
|
|
michele
Reged: 06/02/03
Posts: 6886
Loc: southeastern michigan
|
|
|
Ok, so my boss is friends with a dr botzin, who is a crohns specialist!! This dr just called me himself. He said that yes, I probbly do have crohns. He will see me next Wednesday! He said NOT to stop the ra meds. I didn't want to take too much of his time on the phone but he sounds really nice. PLEASE let him be able to give me some answers!!!
--------------------
Taking it one day at a time.....
Print
Remind Me
Notify Moderator
|
|
|
I'm hoping this doctor can help you - you need some relief!!!
--------------------
>>>>>>>><<<<<<<<
Michelle
IBS-A, pain predominant
Print
Remind Me
Notify Moderator
|
Re: Michele
#277890 - 08/10/06 10:46 AM
|
|
|
|
|
michele
Reged: 06/02/03
Posts: 6886
Loc: southeastern michigan
|
|
|
No, the ra and ana are two different things. It is possible to be what they call serum negative ra but those people will usually have a low ana test. Ana is usually associated with lupus. They actually use imuran for crohns but that one makes me sick. I just spoke with a dr who specializes in crohns and he said i probably do have crohns. He will see my next week. Hopefully he will have some answers.
--------------------
Taking it one day at a time.....
Print
Remind Me
Notify Moderator
|
Posts
