I have a complicated medical history. I am 55, overweight and out of shape. I have had a total hip replacement and soon will have another.
Two years ago, I started feeling very fatigued. I became heat sensitive, had excessive sweating, urine feels hot when I do anything physical, numbness and tingling in hands and feet, postural hypertension, wildly fluctuation of blood pressure, palpatations, fast heart rate, left sided headaches. subjective weakness along with weakness in left leg and arm.
I have been to every doctor known to man. They have done 3 lumbar punctures and have found 12 oligoclonal bands in my spinal fluid not in my serum which is pretty specific to ms. I have had at least 5 mri scans of brain and t-spine, and spinal cord that show NO leisons. The doctors have done all the blood tests to rule out all the inflammatory disease along with lyme. My chest exray is normal.I have a vague feeling of something under my right rib cage that feels like a fist when I am in certain positions especally leaning forward of squatting. They have done ct scan of abdomin, small bowel followthrus and abdominal ultrasounds.
I have developed chronic sinus infections off and on for two years. The latest started in summer. This fall I finally asked the ent to culture it and is came back with pseudomonas aeruginosa. I now have been on cipro and saline gentomician for weeks. I have had ct scan of sinus that show partial opacification of spenoid sinus. I have been to allergist..have no allergies. Been to sinus institute at stanford u and they say sinus is minimal disease.
This spring the ms doc ordered an acth test that came back low. I was referred to an endocrinologist who did the pit stim test twice and dx me with secondary pit insufficiency. He put me on hydrocortisone and told me I would feel much better. I didn't so he kept increasing the dose. I still feel weak and dizzy, especially when I stand up.
I finally went to a new endocrinologist she thinks that I never did have a pit insufficiency..I had had three lumbar injections with cortisone around the same time as the original sample testing for acth was done. She is now testing me for pheochromocytosis. But from what I read..there is no connection with the nervous system that would relate to the abnormal spinal fluid which is still scary. I have developed ligament sorness in foot and shoulders and tenderness on the bones in hands and feet. My iron binding capacity is high..452. My neutrophils are mildly elevated.
I am sorry this is so long. I am so weary of going to doctors. No one seems to know what is wrong with me even at the ms clinic at ucsf. I am not even sure how to proceed. I have become a couch potatoe..am so weak at times I just stay in bed. I try to get up and do things and then I am dizzy or too tired to even grocery shop. My life has come to a halt. I have two beautiful grandchilden and a nice hubby and I love to garden and am involved in my community. I don't feel depressed..just weak.
Any help would be appreciated!
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