Discussions By Condition: Medical Stories

17 Years of Confusion

Posted In: Medical Stories 3 Replies
  • Posted By: ally46902
  • October 18, 2006
  • 00:08 AM

:confused: Hello, I need some help. I am at my wit's end with health problems and no answers! I am a 53 year old woman, 5' 7" tall and weigh 300 pounds. I have been overweight since I was 16 years old. Ok, this began in 1989 with chest pain that went to my left arm and shoulder, sometimes to a spot on my back. The pain was so severe I was in the ER many times. There were no heart problems. I have had so many heart tests, they have always been negative. I started having anxiety attacks when I went out of the house. They found no medical reason for any of this and I was told that depression was causing my problems. I went through years of psychiatric care, tests, medications, and therapy. Now, I can say that I am not depressed or anxious. I know how that feels and it is gone. Last year I had breast cancer. I am lucky, it was found so early that all I needed was surgery and radiation. Today, the cancer is gone:D . This year has been bad. I have had so many medical problems. My doctor says that I have cronic renal failure, anemia bad enough that I had to have iron shots, bladder infection that will not clear up, blood in urine, joint problems, my knees are end stage, bone on bone, carpal tunnel. I still have the chest pain in my breastbone and ribs. I have pain in my legs that will not allow me to stand still or walk for more than 2 minutes. I have pain in my back, the middle of my back, that is severe and radiating to my shoulders, chest, arms, and legs. I also have numbness in my face and at times, most of my body. Also, I was tested for a disease that my half-brother has, sneddon syndrome, it was positive that I have the antiphospholipid antibody that causes abnormal blood clotting. I have been started on blood thinner. I have headaches constantly, dizziness, and have fallen many times in the last few years. I have developed a break out of some kind on my face. The sores will not heal and have left some scars.
I have been put on 3 pain killers. They help dull the pain, but I don't feel safe driving now. When I go out I have problems. I can't walk enough to shop for groceries without resting. I have to depend on my 85 year old mother to help me! I am alone, live alone. Oh, I am adopted and don't know much about my birth mother, she died 8 years ago from diabetes complications. My half-brother had a major stroke and is in a nursing home.
I just want to know what is wrong with me so I can be treated for it. So far, they have treated my symptoms, not the problem. I have had so many tests, scans, ultrasounds, and mris. The tests are always negative. That may be good, but I am feeling so bad. There has to be an answer. :confused:

I was in my doctor's office yesterday to have my p.t. blood test done. He was there and looked at my face to check the sores I have developed. He told me that I need a biopsy done. I never expected that, I don't know why, it would be logical. I have a appointment with my surgeon.

Also, I forgot some things about myself. I have ringing in my ears so loud that I have problems hearing. I have developed a problem with skin sensivity to the sun. The first time I was in the sun this summer my arm felt like it was on fire immediately. I had red blotches that reappear every time I get too warm. Also, when I try to fall asleep a part of my body does a involuntary ***k enough to get me wide awake and scare me. Now, it is happening when I am awake too. For instance, last night I was sitting on the bed and started to nod off..my right leg kicked my left leg so hard that I fell off the bed!!! This body is acting strange...

I am serious about this, but if I don't laugh I will cry and I have done enough of that. And to the first reply, thank you, I had a sleep study done last year. I tried a C-PAP machine. I couldn't handle it. I felt like I was drowning when I felt water running down my throat. They got me a B-PAP...I picked it up the same day I had the mammogram last year when they found cancer. I have never opened the box. I have to force myself to try it. I pride myself on the fact that I have always done what every doctor wants me to try. That includes so many medications, tests, and hospitalizations. I hope someone has a answer for me, the only thing I can see is that maybe I have lupus....Thank you for listening :)

Reply Flag this Discussion

3 Replies:

  • Have you had an overnight sleep study? With your level of problems related to obesity (although some are related to auto-immune disease -- you mention AntiPhospholipid), i think you deserve one. Do you know about the connection of sleep disorders causing obesity, high blood pressure, stroke risk, etc? Most people do not. Sleep disorders boost high blood pressure, obesity, daytime sleepiness, diabetes, depression, Appetite (eg ghrelin & leptin levels changed). Your case is complicated and i don't feel able to give more advice than that.
    emma_chase 9 Replies
    • October 19, 2006
    • 01:55 PM
    • 0
    Flag this Response
  • Hi Ally - It's been a few years so maybe you won't receive this reply. In any case, I wanted to let you know that your diagnosis of Sneddon's Syndrome does indeed account for most of your symptoms. We've just begun the U.S. Sneddon's Foundation and would be happy to help in any way we can. Visit us at www.sneddonsyndrome.org and send us an email!Hope you're coping ok -Diane
    Anonymous 42789 Replies Flag this Response
  • If it was not for the Sneddon's I would suggest looking at a metabolic disorder. I had a lot of what you have and found out at 49 that I have a urea cycle disorder along with all the other problems and disorders. The metabolic disorder was the root cause. I hope you do better and will pray for you. You are my age and size. Hugs.
    Abbydoodle 138 Replies Flag this Response
Thanks! A moderator will review your post and it will be live within the next 24 hours.