Re:Update
#314641 - 09/06/07 08:47 AM
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michele
Reged: 06/02/03
Posts: 6886
Loc: southeastern michigan
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Sorry I haven't been around much, my life is pretty crappy at the moment. I did see the internist, the one dr who I have always liked. Apparently the dork from U of M called her and she didn't even want to listen to a word I had to say. Very long story short, she basically told me the same thing, I am fat and depressed. Never mind that when I first got sick, I weighed 136 pounds!
She told me that none of the many drugs I was on were "life sustaining" her exact words and that I should stop them all and see a shrink! Needless to say I left there bawling an hour later. So, I stopped 90% of my meds. One was a blood pressure patch and three days later, I was so dizzy, I couldn't hear because the ringing in my ears was so loud. I stopped at the pharmacy and took my bp, it was 180/126. I looked like hell, all pale and sweating and they wanted to call an ambulance but I refused. The pharmacist said you are NEVER to just stop bp medication, she was furious when I told her my dr told me to.
After a couple of days of near stroke level readings, I put my catapress patch back on and my bp is back down to relative normal levels.
Mt pain is pretty bad because I am swollen up like a balloon from stopping the prednisone and the humira. I am not sleeping and have been on a crash diet, lost 4 pounds in 6 days. Overall, I look awful and feel worse.
I can not think straight, I am dizzy and light headed and can't even describe the extreme exhaustion.
I did call and set up an appt with an endocrinologist for Sept 20.
Sorry, not real cheerful but I can barely focus on the screen and I just want to curl up in bed and pull the covers over my head and stay there for a month or two.
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Taking it one day at a time.....
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I don't know what to say about your internist. Her attitude sounds horrible. Sometimes I think that when doctors can't help they just decide there's nothing really wrong with us. I suppose it makes them feel better but it sure doesn't do much for us.
I hope the endocrinologist can be of some help - and has a better attitude.
I'm sure you're sick of doctors but at one point you were talking about trying the Mayo Clinic. Is that still on the table?
Take care.
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[Research tells us fourteen out of any ten individuals likes chocolate. - Sandra Boynton]
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That sounds awful, Michele, I'm so sorry you're having such a hard time. That doctor sounds horrible!! You certainly don't need that on top of anything else. I'm sorry I don't have any words of wisdom, just wanted to let you know I'm thinking about you. Sending HUGS your way!!!!
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Lisa, IBS-C (Vegan)
Stable since July 2007!
Mommy to Rhiannon Marie (Dec. 13, 2008)
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Re: Update
#314678 - 09/06/07 04:09 PM
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kim123
Reged: 07/18/06
Posts: 543
Loc: Florida
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Michelle...I am so angry that those doctors have not been able to help you. They seem to be making things worse! I have been following your story now and then, and I'm wondering if you, or the doctors, ever considered that you may have a fungal condition. Fungus can cause many diseases and illnesses. Have you been to, or would you consider, a naturopath? In no way do I mean to cross the line here...doctors aren't helping at all, maybe you need a different approach. Take care. I am hoping for the best for you.
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Oh Michele!
#314687 - 09/06/07 05:51 PM
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Toady
Reged: 04/06/06
Posts: 1299
Loc: A small city, Northwestern Ontario, Canada
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My heart breaks every time I read a post from you, especially one like this!! I still can't believe there is nothing out there to help!!!
I really hope the endocrinologist has something more informative to tell you. I can't believe your interist!!
Keep an eye on your BP - I know from being really low BP normally that it isn't something to mess with. Today I was 96 / 62. We should hook-up to each other and our BPs might average out to 120 / 80!!
I wish, as always, for a magic wand to wave over you. Until that dream comes true, know I think of you often and worry when you don't post. But I understand how difficult that must be for you, and just pray for a miracle.
Take care of you sweetie - and don't lose too much weight too fast - that won't help you either!
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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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Michele, I'm so sorry about the treatment you got. I keep hoping that someone will give you the time and attention you deserve to get to the bottom of this. Please keep your head up and keep hoping for a better day! {{{{{Hugs}}}}}
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Christine
Those who can do; those who want it done better teach.
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I only have a couple of minutes as the boss is in today but wanted to say thanks to everyone for your kind replies.
The fungal thing I have thought about but not sure what they use to test for that? I know that I have been exposed to black mold. I do, well did, have an over growth of yeast but treated that with 5 months of nystatin.
It was suggested to me to read the book called How Doctors Think and I just picked it up last night. I am hoping it will give me some insight on how best to handle my upcoming appt.
Right now, I am so exhuasted I can not even describe it but I am sure that is because what ever cortisol I had in my some from the steroids is gone and I know my adrenals are not functioning. But, at least my blood pressure is more stabilized.
I am just trying to get through each day at the moment and keep hoping that I will eventually find the right person to help me.
My appt is the 20th of this month, I will be sure to post an update but I am sure I will pop in from time to time as I miss everyone here.
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Taking it one day at a time.....
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So glad to hear from ya Michelle! Hang in there girl....I know you can do it. YOu've been through SOOOO much. I'm hoping that being off more meds might help ya too. Hey, you can only try...if it doesn't work then at least you can say to another doc "I TRIED THAT!!!".
I feel for ya, I really do. I hope the endocronologist has some answers for you.
Keeping my fingers crossed and HUGE HUGE hugs for ya!!
Keep in touch.
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~~~Lisa~~~
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Michele, You said you were exposed to black mold. How do you know? What were the circumstances? Did most of your symptoms manifest themselves after your exposure? Was that "very important factor!" ever brought up in your doctor visits. Mold, especially black mold, can wreak havoc on our health. After reading your story, hearing about your symptoms,and seeing all the drugs you've been on,I am still betting your condition is fungal related. It is documented that fungal toxins make tissues swell and cause pain, can trigger FM, sap your energy, cause high blood pressure/ high cholesterol, mimic symptoms of RA, to name a few. Sound like anyone you know? Michele, you're breaking my heart here. Don't discount fungi being the cause of your symptoms. Find a doctor who will listen, and at least investigate the possibility. Seek out a naturopath, if necessary. Even then, they all don't know a lot about fungus. Maybe it's not a fungal/mold problem, but, what if it is......
I'm praying you will find your answer.
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Thanks Kim. The black mold is in our office. We had it tested because the office next to us remodeled and they said they had it. The testing was like $500 but my boss wouldn't pay for clean up and he just put bleach on the spots. It is around the floor trim.
It wasn't too long after that that I started having issues. I have mentioned it to my doctors but they all shrug it off as no big deal. It is at the top of my list when I see the endocrionologist in a couple of weeks. Not sure if there is any specific test they can do on me or what sort of treatment would be available?
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Taking it one day at a time.....
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