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 February 17, 2009, 08:24:31 PM
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Newbie
Posts: 7
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hi, I'm 33 years old and have been sick for several years, but it has been disabling since last year in January.
I've had basic blood workup, Chem profile, blood gas, d-dimer. I've had a MRI of the brain which showed a mastoid in my sinuses. I've had chest xray's, and chest CT scans.. Most of everything basic they've done was because I was in the emergency room, only thing outside of the ER done was a 24 hr urine collection and some blood tests for the neurologist which is what showed my Vit D being at 10. Last year I probably went to the emergency room more then 50 times no joke. I was having SVT attacks, and end of October the did a heart cath ablation on my sinus node tissue (modification) since they couldn't find any other accessory pathways that could cause my attacks, but my HR was getting up to 200 BPM in like less then 15 sec's. I also had my gallbladder removed last year because they thought that was gonna be cure-all according to my 1st PCP. I'm on my 3rd PCP and Friday I go see a new one.
I'm very frustrated and everything is causing me depression because I feel like I'm doomed to die. I feel like nobody cares or wants to help. REALLY help. I can't even exercise because of the debilitating symptoms, and on top of that I was denied disability and my FSA has already ran out of funds for the year so I have no idea how I'm going to afford my doctor visits. My husband can only do some much.
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February 17, 2009, 09:42:04 PM
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Newbie
Posts: 7
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Yeah my 1st doctor totally wouldn't listen to me, and tried arguing with me and saying it's all in my head and I needed a psychologist, this was before they found my attacks being SVT with arrhythmia. Then my second PCP tested my urine and stool for porphyria and did my glucose tolerence test, and that was it. He alway's said I've checked you for everything but actually only thing he did was basic blood profile tests. He didnt seem to care that my WBC was alway's high, or that I had blood in my urine, or my Red blood count was low, he blamed it on something, like my mensus or anxiety or something along those lines. He told me he wanted to contact my insurance company and try getting me referred to the Mayo clinic, which is all the way in MN (closet one to me), I live in Kansas. I can't afford going to a Mayo Clinic, I live close to Kansas City, and I know there's gotta be someone local who can help me. But unfortunately it has to be by referral.
There's been so much going on with my health. Since my ablation I've gained 35 pounds :( I was at 295, now I'm at 330... sigh this is killing me!!!!!
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February 17, 2009, 09:54:08 PM
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Newbie
Posts: 7
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Sorry I keep going on, but I do have a new symptom that we found when I was in the hospital last week for pleurisy. I have a lump in my back that hurts alot. It's located middle to lowe part of the right side about 2-3inches from my spine, kind of around my kidney on that side. I have been waiting since last friday for the doctor's office to call me back for the CT scan appointment to get it checked out. They still havent called me back and I just talked to them again today.. sigh
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February 17, 2009, 11:28:00 PM
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Newbie
Posts: 7
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Thanks for the reply, I've only seen a internal medicine doctor and a endocrinologist as well as a neurologist, I want to get into see a Infectious disease specialist, but you have to be referred.
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February 21, 2009, 11:24:08 PM
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Newbie
Posts: 7
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Any news on appointment date for a CT scan ? If they don't ring you back, keep rining them until your get a date set   Sammy CT scan was clear... I had to cancel my new PCP appt because I didn't have enough money for co-pay, and the best news of all? I FOUND MY BIO-LOGICAL MOTHER 2 night ago!!!!!!!!!!!!!!!!!!!!!!!!!! She had a lot of the same symptoms I do when she was my ago, and was finally diagnosed with fibromyalgia. Her Mother died a couple of years ago with emphysema, but before she died she also suffered from Menieres Disease, which could explain my vertigo/dizziness and pressure issues. However my Mom suggests getting check for lyme disease also, since all my symptoms point to that. So I really need to get a refferal to a Infectious disease specialist.
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February 22, 2009, 03:31:35 PM
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Full Member
Gender: 
Posts: 125
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