Doctors do their one or two tests and pass me on! No one will help me!
I just put Addison's disease because there was no general question topic. I do not know what I have, but I just want my life back and doctors cannot be bothered!
From the age of 18 I have had pain problems, dizziness, gastrointestinal issues and fatigue. My symptoms would come and go. I had pain in my hands, wrists, fingers and sometimes arms. I also had back pain, but I did fall off of a roof, three stories, when I was 16, so doctors always concentrate on that. I had dizziness and fatigue that was minimally to moderately bothersome.
After I had my son, my symptoms got worse in my back. My back would "go out" randomly and I would not be able to move for a few days. My wrists and hands continued to bother me as well, but I had my life to live and no health insurance.
After my second child, my symptoms got worse again. My back bothered me a lot more; I had pelvic pain, and what felt like restless leg syndrome. My legs would ache and ache.
I started going to doctors and was eventually transferred to a pain management dr. who decided to do an epidural. I do not know what happened during the epidural, but in the middle of it, I screamed out in severe pain. My back, pelvis, and legs hurt a great deal. I then had a hard time walking from the Drs Office. Two days later she put me in the hospital and they found nothing. I was released with a hospital bed, wheelchair, and commode. After some time, I decided I was not going to sit and rot and I started going to Drs and hospitals to find an answer. Eventually someone decided to do back surgery, treating me like garbage along the way. He did a fusion of L5- S1 and I had little relief. Over the last 3 years since the epidural, many symptoms have worsened or appeared. I live in constant pain and I have mobility issues. At first it was just my left leg, but now it is both legs. I have pain in my muscles, which tie up in knots, my middle and lower back, my buttocks, my legs, and feet. My left foot turns bluish and always has brown discoloration on it. I have amenorrhea; I have had a menstrual period about 7 times in the last three years. My neck has also started bothering me to the point where I cannot hold me head to the side or down for long. Recently MRI found that I have 4 discs with bulging. I also have spinal stenosis in my cervical and lumbar region. My arms, hands and fingers hurt a great deal more in the last few months. I have right shoulder pain. I have dizziness all of the time. Many times throughout the day, I just feel sick, weak and horrible like my whole body hurts. I also have some spells where my dizziness causes me to almost fall and it appears that the world is folding in on itself. I have fatigue issues that are not always present, but often. They fluxuate in severity. Many days I feel very tired despite how much I sleep. I have spells of sleepiness where I could not stay awake if I tried. I could fall asleep in the middle of anything. It is not medication related because it did not start with any medication. I have slept up to 42 hours in a 48 hour period. Other times, I may have a week where I feel normal as far as sleepiness goes. I have tachycardia and palpitations. I have lost a great deal of weight, about 20 lbs bringing me down to 104. I often do not feel hungry; I will just feel a certain dizziness that tells me I need to eat. I do not eat as much as I used to, but I do still eat. I want to eat. I want to put more weight on. My hands swell to the point that my rings have to be moved from finger to finger. Sometimes they will flop around on my largest finger and others they have to be moved to my smallest. I have chronic constipation, but I am on oxycodone. Before I was put on medication, and even before the epidural, I had chronic diarrhea. Over the last few months, I have been feeling nauseas. My arms and legs are weak. I have episodes where it feels like a great deal of pressure in them. They will feel heavy and like I cannot hold them up. I also have patchy vision that comes and goes. My vision will have bright spots and shady spots. I have abdominal pain where I will get sharp pains. I have also been having pains in the flank of my stomach and in the same spot on my back on both sides.
I also have cognitive issues. My brain just does not appear to be working as well as it used to, but a large degree. Others have pointed out to me that I say the wrong words without even noticing. For example, I will mean to say, “Can I leave the children here while I run to the house?” and I will actually say, “Can I leave the car here while I run to the house?” That is just a small example of a large problem. My memory is very disturbed. I have even noticed that I write the wrong words. I have to think a lot more about things that used to just flow out of me. I have a delay in answering people at times. I “space out” a lot. My vision goes blurry sometimes. It feels like my eyes shift and go out of focus. This could be a result of my contacts though.
I have periods where I am not as bad and periods where I am much worse and stuck in bed for days. My pain is consistent, but fluctuates in degree of discomfort.
Recently I was put on a tapered off pack of methylprednisolone for an issue with my eyes and on the second day, I felt almost like my old self. All of my pain was not gone, but for the most part, I felt absolutely amazing compared to how I have felt over the last three years. I was walking almost normally. I did not feel dizzy, tired, or sick. I did not feel nausea. I felt strong and like a real person again. When I told my dr. she said, “Everyone feels great on steroids. You cannot stay on steroids.” Then she gave me a referral to another dr. that will probably not help me. When I was granted disability, the judge told me I should go back to Connecticut where I am from, in order to get a diagnosis because he said that the doctors in South Florida are often too concerned with getting patients in and out to spend time on a diagnosis. I agree with him. A doctor will give me one to three visits and 0 to 4 tests before I will be a waste of their time and they will pass me on. I have had very little blood work done in the last three years but I know that there is something more than failed back syndrome. I just want my life back. I have completed a lot of research. I have been in touch with a group of Drs online that mentioned getting my cortisol level checked because of the difference on steroids. I have a friend whom I grew up with in Connecticut that works in epidemiology at Cornell and he suggested that I be tested for Lyme disease. With all of the research that I have completed, MS and Lupus are often mentioned. If anyone has any other ideas or knows of any Drs in south Florida that will actually help me, I would appreciate it! I would do anything to have my life back.
I'm so sorry that you are going through all of this, and at such a young age.
I too think you should look into lupus. There are 11 criteria of lupus, you need 4 of the 11 for a lupus dx.
1. malar rash (butterfly rash)
2. discoid rash - red raised patches
3. photosensitivity - reaction to sunlight, resulting in skin rash
4. oral and or nose ulcers
6. serositis - inflamation of the lining of the lungs or heart
7. renal disorder - excessive protein in urine and or cellular cast
8. neurologic disorder - seizures or psychosis
9. anemia or low WBC or lymphopenia or low platlet count
10. positive ANA
11. positive anti-DNA, anti Sm, or antiphospholipid antibody or false pos. syphilis test
Other symptoms are:
shortness of breath
blood in urine
hair falling out
muscle pain and weakness
poor circulation in fingers and toes
tingling in extremities
raynauds (where fingers turn white when cold)
intollerance to cold
...to name a few
Keep in mind that fibromyalgia, CFS, MS and lymes disease also have similar symptoms.
If you have any more questions, just let us know. We all care about you and pray that you get better.
They won't help you, because they can't diagnose you. If they could, most likely they will have nothing to help you.
You can list 1000 symptoms, but really, there is only *1* disease, and that is sick cells. Trying to treat all that with prescription drugs is unfortunately an endless battle (generally leads to more symptoms). I suggest picking up some good litterature on natural healing and proper nutrition!
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