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Author Topic: Trying to figure this out- frustrated  (Read 4630 times)
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UCTDsuprised
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« on: April 05, 2010, 07:55:36 am »

I Have just recently, in the past 7 months been so overwhelmed . It started like this. I started having severe back pain, and pelvic pain. Then I
noticed tingling and numbness in my feet. There ere days I couldn'r get out of bed, it was too painful to stand. So I decided it was time to go to the Dr.
After many times of being told they didn't know, no one could understnad what was happening to me. I was losing weight, and my hair. One Dr ran some kind of test on my thyroid.
It showed I has Hashimoto. I thought that was great, they finally found the problem, but that was just the beginning. Soon I had pain throughout my entire body, and the Drs had put me on vicodin
which doesn't do too much, but does help some days. One day I noticed I had a GI bleed, that continued for a few days, and I ended up hospitalized for a week. I am now anemic, have low potassium, and the Drs said my ANA count was very high, along with anti- DNA antibodies. It's all been very strange. They did a colonoscopy and it showed erosions throughout, butt he biopsy was clean. So that leaves no explenations. My rheumy says I have Raynauds, Hashimoto Syndrome, UDCT, and he is sure I have Crohns. He is talking about starting Remicade treatments. I have been on methotrexate, prednisone, and sulfalozine. If anyone has any suggestions or has been through any of the same situation I would love to hear from you. The pain is unbearable some days, and it makes caring for my children so hard. I make the best of my good days. I'm only 34. I feel like this is so out of the blue. I'm so frustrated, and feel like there is no end in sight.
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« Reply #1 on: April 05, 2010, 09:06:27 am »

Hello & welcome,
I am sprry to be reading all that you have been through.
It sound slike they are running all the tests and giving you  treatment, but perhaps the Drs are not getting the *right meds* in you.
Menaing a combo of drugs, or the milligrams of meds needed to help you out.

Please call him back, tell them you are getting no relief with what you are doing daily right now.
Be sure to mention you have small children so they can understand not to be giving you too much of a sleepy side effect medicine.

Here is our more active board www.LupusMCTD.ning.com
This is where most active users post now if you'd like to come over there.
Gentle Hugs,
Kathy
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I look normal, as I have an "Invisible Illness". You can not catch it, you can not see it. It's called Lupus.My body is attacking itself on the inside.
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