At my wits end, not RA??
#277843 - 08/10/06 08:16 AM
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michele
Reged: 06/02/03
Posts: 6886
Loc: southeastern michigan
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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???????????
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Taking it one day at a time.....
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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
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http://ibsblondie13.blogspot.com/
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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.
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Flipada - IBS-C "It's a gas, gas, gas"
**Lauren**
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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.
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If you're not dead, you've still got time.
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Re: OHMYGOD!!
#277861 - 08/10/06 09:24 AM
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michele
Reged: 06/02/03
Posts: 6886
Loc: southeastern michigan
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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.
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Taking it one day at a time.....
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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
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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!!
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Re: Update
#277888 - 08/10/06 10:36 AM
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michele
Reged: 06/02/03
Posts: 6886
Loc: southeastern michigan
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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!!!
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Taking it one day at a time.....
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I'm hoping this doctor can help you - you need some relief!!!
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>>>>>>>><<<<<<<<
Michelle
IBS-A, pain predominant
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Re: Michele
#277890 - 08/10/06 10:46 AM
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michele
Reged: 06/02/03
Posts: 6886
Loc: southeastern michigan
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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.
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Taking it one day at a time.....
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Michele
#277892 - 08/10/06 10:59 AM
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Nelly
Reged: 08/06/04
Posts: 4381
Loc: Within stray mortar fire of DC
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This is unbelievable! Can you march down to your rhumy (or wheel down) to confront her in person?? I mean, you're their patient. They should be taking every one of your calls.
~nelly~
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I suyre hope they figure things out soon for you. Really? Crohn's as an adult, and they're just figuring it out?
Yikes.
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Keep on keepin' on...
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Re: Michele
#277905 - 08/10/06 12:16 PM
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michele
Reged: 06/02/03
Posts: 6886
Loc: southeastern michigan
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I just sent a rather nasty fax to the rheumy. I need my records to take to my appt next week. We will see what sort of response I get from them! GRRRRRRR!!!!!!
Leaving work early, need cold pack for head, vicodin and bed.  Have full day of patients tomorrow...will me some strength to get through the whole day at work tomorrow.....Will is working a festival this weekend, will stock up on chick flicks and comfy jammies-my and the boys will hold the couch down all weekend! 
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Taking it one day at a time.....
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Quote:
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!!!
{{big hugs}}.... PLEASE let this guy help you... and give me the address of the RA doc.... I'll use my kickboxing moves on her!!  how dare she and her staff be so rude to you!!
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www.facebook.com/shell.marr
www.myspace.com/shellmarr
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Sorry you are having to deal with all that attitude from people who are supposed to be professionals...on top of everything else. {{{hugs}}} Wish I could wiggle my nose and make everything better. Hang in there.
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Re: Update
#277925 - 08/10/06 03:31 PM
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ArmyWife87
Reged: 06/05/06
Posts: 99
Loc: Canada - East Coast
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Hi Michele,
I wish I had something inspiring to say to you. I was also told last month by my new doctor that I was miss diagnosed for the past three years and had been taking meds that I didn't neet to take, considering these meds killed my stomache and worsened my IBS....I was a little miffed.
I just think at this point, if its possible, find another specialist and get another opinion...frustrating as that is you may at least get some concrete answers in the long run.
I hope you are able to get answers soon.
Good luck,
Claudia
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Life is not measured by the number of breaths we take, but by the moments that take our breath away
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Good grief, woman. I can't believe all the crap you have to go through.
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Carol
nós somos o que nós somos e o descanso é merda
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I cannot believe what your Dr said!! How utterly terrible!! And just when you thought you had found a great Dr.
I hope that you can find out what is wrong. I really feel terrible when I read your posts and what you go through in a day. (And I'm amazed you were at work through a majority of this!)
(((((((((( HUGS )))))))))))))
Cassandra
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Cassandra
Live like there's no tomorrow. Love like you've never loved before.
IBS A 20+ years, Chronic Migraines, Chiari Malformation (decompressed June 22, 2010), Brachial Neuritis, and ??? the list just keeps growing, but I'm still shiny side up! 
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I'm so sorry Michelle. Sounds like you are having a rough time. It hasn't been my favorite summer either.
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I hate that doctors can be like this! What ever happened to "first do no harm"?? There are good doctors out there, but its not easy or even possible to pick and choose when you're in the midst of a medical crisis as you are. I'm hoping that this Crohn's specialist can help you and I hope you feel better enough to tell off your Rheumy doc real soon!
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Ladies & gentlemen take my advice, pull down your pants and slide on the ice.
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Hi Michele,
That is so great that you are going to be able to see this Chrohn's specialist!!!
Hopefully he'll be able to run all of the tests on you to see what's going on and will be able to give you a clear diagnosis.
Jenn
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OMG Michele
#277966 - 08/11/06 05:55 AM
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Janey
Reged: 10/25/03
Posts: 1716
Loc: Maryland
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I can't believe this! I'm sure you can't either. I don't understand the new Rheumy docs attitude towards you. It is like you tried to fool her into thinking you had RA. She is the doctor here and the professional and you were relying on her to tell you what was wrong. It makes no sense at all.
I can't imagine how you are feeling right now. I am so sorry that you are faced, once again, with a road block. I don't know anything about Chron's so I will have to do some research. I really feel in shock right now as I am sure you do too.
Huge hugs sweetie! I wish there was something I could do to make this all go away for you.
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Janey
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Forgive me for not replying to each of you individually but my head is splitting and my eyes are so blurry. We have a full day of patients at work today and I haven't any idea how I'm going to make it through the whole day!!
I'm utterly mystified t my new rheumys behavior this week. However, I'm holding onto hope that this crohns specialist will be the one to help me!!!
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Taking it one day at a time.....
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No need for replies. Take care of yourself. We ALL send BIG HUGS!
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Flipada - IBS-C "It's a gas, gas, gas"
**Lauren**
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and was VERY apologetic, as she should be!! She explained she had just returned from vacation that morning, blah, blah, blah. She said it was no excuse for how I was treated and said she was sorry for her and her staff.
She still believes that I more than likely have crohns and not ra. The treatments are almost identical though. She went over a bunch of labs and we talked for about 10 minutes. She said to see the crohns guy next week and if he doesn't start me on humira than she will when I see her the 29th. She said that they usually co manage people with crohns who have the arthritis and uvietis issues.
She is faxing over my lab results to take with me when I see the crohns guy next week. The lab forgot to run a test so I have to get stuck yet again. No wonder I'm anemic, they have sucked out more vials of blood than I can count!
Hopefully, I'll get some answers soon!
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Taking it one day at a time.....
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Hi Michele,
Glad to hear that you were able to speak with the rhuemy today and that she apologized!
Good luck at your appt. next week with the Chrohn's specialist.
Try and put your feet up and enjoy the weekend with your puppies.
Jenn
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...but at least she had the grace to apologise.
Fingers crossed between them they'll diagnose you correctly / sort you out for once and for all! Will have everything crossed for you...
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http://ibsblondie13.blogspot.com/
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