Discussions By Condition: I cannot get a diagnosis.

Please take the time to help me if you can!

Posted In: I cannot get a diagnosis. 0 Replies
  • Posted By: spitfire1967
  • February 6, 2010
  • 08:57 PM

First let me apologize in advance for the length of this. I will try to be as brief as possible but I don’t want to leave out any information that may be valuable.

I am a 43 year old female. My weight is 230 and my height is 5’2”.

In 1998 I started rapidly losing weight, having insomnia, and always being hot. I had a lump at the front of my neck that kept growing. At this point I weighed 115. Through a series of Dr.’s appointments they diagnosed me with Graves Disease and killed my thyroid with radioactive iodine. I was then placed on levoxyl. Immediately following this procedure I began to have severe cramps in my legs (mainly) and various other parts of my body. Several Doctor’s told me they didn’t think it was related to my thyroid level, but after appx. 6 months this problem went away as quick as it came. This was all over the course of 2 years.

In 2000 one of the tests they did on me was a stress test. I weighed 150 at this point. I failed the stress test and they did a Cardiac Catheterization and the cardiologist said I was “clean as a whistle”.

In 2003 I weighed 180 pounds. I started having what I referred to as “spells”. Out of nowhere, even from a sound sleep, I would get this really flushed feeling in my neck and face. My lips would tingle and my chest would get extremely tight. 50% of the time this would be accompanied by an urge to have a bowel movement. After 3-10 minutes these symptoms would pass and I would be freezing cold and very faint. I only passed out once. While these “spells” were happening, I was sure I was dying and we made several trips to the ER. Whenever this happened the EMT’s could rarely get a blood pressure and my pulse was always very faint. By the time I would get to the hospital via ambulance or our personal vehicle, most of the time I would feel better, but like I had just recovered from a week long illness, very drained. All blood work, EKG’s, urine, etc. was always normal. The only thing that wasn’t, was my BP was usually extremely low, and if they gave me any medication that tends to lower your BP, i.e. morphine, beta blockers, etc. mine would drop to sometimes as low as 69 over 38. They would pump me full of fluids, bring my pressure back up and release me. These spells increased in severity and frequency over the course of 3 years. I went to numerous specialists and everyone kept telling me I was fine. They convinced my husband this was all in my head. It got so bad that even the stress of digesting normal food would drop my BP and heart rate at the same time.

In 2006 I requested a tilt table test and had what I believe they called a vassal vagal response. (not sure of the spelling). A Harvard educated Doctor told me that I had what was known as Autonomic Dysfunction but couldn’t tell me where it was coming from. He prescribed Midodrine to raise my blood pressure and Florinef to keep it elevated to a normal level. This worked perfect and for 2 years I was emergency room free and felt like I was back to normal except for the enormous weight gain and lack of muscles from being sick for so long I assumed. At this point I weighed a little over 200 pounds.

In 2008 I started having left rear flank pain and some chest pressure. The gynecologist told me I had a 1.3 cm cyst on my ovary (don’t remember if it was right or left) and that the lining of my uterus was a lot thicker than it should be. I also was having extremely heavy periods at this time, sometimes lasting over 2 weeks. The OBGYN said to “wait and see” so I haven’t been back yet because right after that my Mom was diagnosed with stage 4 Esophageal cancer and that took priority. I did have another Cardiac Catheterization done in June of 2008 and it was completely normal again. I was taken off the Midodrine and the Florinef at that time, and my blood pressure remained steady. It was like I had never had the autonomic dysfunction and a Dr. told me sometimes it just goes away for no reason. Sounded suspicious to me, but I felt better again and like I said, I was busy caring for my Mom.

This brings me to now, 2010. I never went back to the Doctor after 2008 because I was constantly taking Mom back and forth and paying the bills and in the process, lost my health insurance. Mom died in Feb of 2009 and I started getting “sick” again in November of 2009. 90% of my symptoms are different now though. I still have the intermittent lower left flank pain, but it’s more frequent now. I also have a pressure in the middle of my back just slightly to the left of the spinal column. If I roll my shoulders forward it feels like the center of my back (muscles) tighten. Also under my right breast, I have the same sensation if I reach around to the back with my arm, it gets very tight, like I pulled something, and takes a few minutes to loosen back up.

My most recent symptoms (as if all these are not enough) started exactly 2 weeks ago. I started having a burning pain in my left groin (off and on) and the back symptoms that I just spoke about. Also at the exact same time I started coughing (non productive) a dry, tight cough, and belching constantly with periodic crackling in my ears, sometimes almost feels like something crawling in my ear or something wet. I now weigh 230 and I have joined weight watchers which is actually the first weight loss/lifestyle change that has worked since my thyroid was regulated. I once again went to the ER several times. My EKG is normal, CT of the chest and abdomen are normal, small trace of blood in the urine, and completely normal bloodwork. I did have a positive D Dimer but the CT showed no signs of a clot so they were confident that it was just a false positive. I walked 1.5 miles yesterday and my heartrate went up to 150, but the BP was fine. I think maybe I just overdid it, but still just feel bad in general, don’t know how much to attribute to anxiety and just aging and being out of shape for so long. I am still worried though. I walked .67 miles today at a little bit of a slower pace and didn’t have the racing heartbeat so I think that is ok, but I still have what I consider cardiac symptoms but noone takes it seriously, i.e. left shoulder discomfort, intermittent gnawing pain in my jaws and sometimes my neck, tightness/pressure in my upper right abdomen and center of my back.

I am an only child. My father died at 24 of a heart attack immediately following a basketball game. No autopsy was ever done. My mother had a total hysterectomy because of a grapefruit sized cyst (non cancerous) when she was in her late 30’s. After that she was diagnosed with Breast Cancer. After thinking she beat that (masectomy and chemo) she was diagnosed with a separate primary cancer, stage 4 esophageal at age 61 and died within 6 months at age 62. Other than what is mentioned, the only other thing is I was born with a tiny hole causing a murmur. The Doctor said it was nothing to worry about and since I’ve reached adulthood, only one other Dr. has even been able to hear it.
Here is my question (after all that if you’re still reading)…I am terrified that the drops in BP and the general feeling of malaise is due to maybe a spreading of a cancer that has gone undetected or a cardiac issue. I have had CT’s, MRI’s, you name it, all perfectly normal, but I am still feeling just “not right”. Is there anyone out there that has any suggestions or similar experiences??? I am at my wits end. I am finally losing weight and want to be able to enjoy myself when I exercise and feel a sense of accomplishment and not be scared all the time. I know this adds to my symptoms and I feel like when I get so stressed that I immediately just give the Dr.s reason to diagnose me with anxiety and not look any further. I wish I felt like that is what it was, but it just doesn’t feel right to me. Any help would be appreciated.

Thank you

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