Discussions By Condition: I cannot get a diagnosis.

I've been to so many doctors.

Posted In: I cannot get a diagnosis. 3 Replies
  • Posted By: Anonymous
  • January 13, 2007
  • 04:25 AM

I'm sorry if this story will sound so long, but my life after my daughter has been such a long and miserable one (She will be five in May of 2007). I've been to so many doctors and have had so many tests done, that I am absolutely sick of being sick.
First, when I had her via C-Section, they had difficulty placing the Spinal and ended up doing an Epidural. It took one whole hour to place this in my back. After the birth, my husband counted 50 holes in my back where they had tried to put the Spinal/Epidural. Not shortly after (about a week), I started to feel really strange. My face kept getting real hot, my heart was racing and my back in my upper shoulder blades started to ache. I went back to my OB/GYN and asked him to run some hormone tests, which all came back normal. He said that it could be my blood pressure. For some reason, it had gone up after the birth of my daughter. So he put me on a blood pressure pill. And so the pills began........ And so didn't the trips to my Primary Care Doctor. And from there....to Specialists who tell me that something is def. wrong, but that they are not the doctor for me. My PCP first went in the direction of my 'female' hormones because it happened right after the birth of my daughter. He sent me to another Gyno. and had testing done, but nothing showed. That was when the antidepressants were given to me. Yuck! Then my PCP went in the direction that "maybe" something happened when the Spinal/Epidural was trying to be given to me. He then sent me to a neurologist. There I had an MRI of my back and blood work. MRI showed mild arthritis (normal for my age) and blood work showed that my calcium was high (Hypercalcimia). My PCP sent me to an Endocrynologist who tested my Calcium levels again and everything was normal. Also had a bone scan which was normal. I was sent away from her. Had a lot of chest pain and right sided abdominal pain during all of this. I kept telling my PCP that it was my gallbladder so he sent me for an ultrasound....normal. Sent me for a Hydascan...normal. Had a horrible gall bladder attack after eating a fish sandwhich and ended up in the ER talking to a surgeon. He did what they called the "gall bladder technique" where he shoved his hands up under my right lower rib cage. I about hit him. He said he def. wanted to go in with exploratory and look around. I had surgery the next day and sure enough...."I was right". He said it was the worst looking gall bladder he had ever seen. The chest pain and right sided pain vanished. But I still felt yucky. My heart raced; I was very sensitive to heat; my face would get hot and then go back to normal; I was gittery; real nervous; and agitated; forgetful; I was constipated; low grade fever; flu-like symptoms; my back ached; my headaches became daily. My PCP tested my Thyroid levels again and again. He kept telling me I was a textbook for hyperthyroid. My levels kept coming back .1 away from being hyperthyroid. Also had an ultrasound done of my thyroid which showed a nodule about 1 cm. We thought we had hit the jackpot...Hot nodule producing too much hormone. But a Thyroid Uptake Scan showed it to be a cold nodule producing nothing. This Uptake came back at 29%. 30% is diagnosed as hyperthyroid. My PCP also sent me to have allergy testing done. I have difficulty breathing and my heart races very easily; even resting. He thought maybe I was allergic to something. Everything came back normal. I flunked my Pulmonary Testing though, and was diagnosed with mild asthma. I was given an inhaler (which I dont' think helps anything). My PCP also sent me to a Cardiologist for my rapid heart rate. I had a Stress test (fine); wore a heart monitor (just showed a rapid heart rate); had EKG's which were fine; had an Echo done to test for Mitral Valve Prolapse (my dad has this)...mine was leaking a tiny bit but nothing to cause these symptoms. The cardiologist told me that he felt that in his opinion, the chest pain was not caused by my heart. He explained that my heart was very healthy and that with my rapid heart rate and the other symptoms that it was hypyerthyroidism. He put me on Lopressor to slow my heart rate down. It has helped. Went back to my PCP and told him what the heart dr. said about the hyper. and so he sent me to another ENDO. This dr. tested other things as well as my throid hormones. He believed that it was adrenaline related. He tested my adrenal glands and my corisol levels. Everything was normal. Including my thyroid levels. So my PCP sent me away from this area to a University Hospital to see another ENDO for a third opinion. This guy seemed very convinced just by examining me that it was hyperthyroidism. My reflexes were very exaggerated. Bad hand tremor. But when my blood levels came back in the "normal range" he sent me away. After this visit, my low grade fever became a little higher. The nurse at work kept track of it. It ran daily around 100 to 102. They also called from the University Hospital and explained that something did show abnormal on my blood work but had nothing to do with them. For the first time ever, a SED Rate was ran and it came back as 32. My C-Reactive Protein was also elevated. I called my PCP but he seemed to blow me off. I think that he was actually getting sick of me at this point. I called a friend who was a nurse of the surgeon who took my gall bladder out and she said that if it was her, she would go to an Infectious Disease Dr. So there I went. He looked at my blood work and he said I looked very healthy. Except for the SED Rate...which meant really nothing to him. Upon examination, he pushed in on my right side, which hurt terribly. He asked me how long it had been hurting and I said for a few years, but that I had just chalked it up to being constipated. He said that in his opinion I had Chronic Appendicitis. I called the surgeon's nurse and she made an appointment for me to see the surgeon. He said that it was very unlikely that I had Chronic Appendicitis because if it was, it would have burst by now, but that if I agreed, he would go in and take a look around. I had surgery the next day....and guess what? I was almost on the right track. I had two appendix. Only 2% of the population has this. It is a birth defect where the imbilical cord from my mother to me should have dissolved, but instead, it formed another appendix behind my "good" appendix. So when I would have a belly CT, they would see my "good" appendix and send me on my merry way. The surgeon sent me on my way and said that he was almost 99% sure that this was my entire problem and that he didn't want to even test my blood for two months. He wanted to wait for the poison to get out of my system. It has been 3 1/2 months and I just had my levels tested again. MY SED Rate was 46. So what the heck is going on??? I dont' feel better. The only thing that is gone are the fevers and my right side does not hurt anymore. I still think it has something to do with my thyroid. Or I'm also leaning towards a female problem as well. My periods have been very wild. The past year they have been anywhere from a half a day to a day long. Now, the last couple of months, they've been very heavy and lasting almost five days. I've been having menstrual cramping all month long and after intercourse with my husband, I get severe cramping in my right side (just like the sever period cramps I get when I first start my period) and sometimes I end up vomiting. I've also been having discharges frequently and my vagina is so dry. My heart is still racing; I'm nervous even with zanax and Lopressor. Oh....and the constipation is totally gone. The surgeon says that the second appendix was blocking my bowels which was causing the constipation. Now all I have is diaherraha. Another symptom of Hyperthyroid. I'm not sure that I should push this thyroid issue anymore or not. I know it is so hard to diagnose. But I have been right two times in my life now about what was wrong with me. Even when the tests said otherwise. And I am so sick and depressed of feeling like this. I've been finding myself crying all the time now. And all these doctors want to do is give me another pill to try to "fix" or "mask" a symptom I have. I don't want to do that. I feel that something is "causing" me to feel the way I am. I don't want another pill. I want to know what is wrong. Is that so much to ask. Obviously a SED RAte of 46 is showing something is going on. My PCP Dr. wants to send me to a Rhematoidologist next. But he did a general panel and all my RH and ANA was normal. I'm so lost and dont' know what to do. I know that this is so long and if you have taken the time to read the entire thing, could you please respond. I am desperate and slowly sinking into this depressive state that I am very scared of. Thank you for listening. Danielle

Reply Flag this Discussion

3 Replies:

  • Hi,I noticed in your post that you have a high calcium level. Have they tested you for hyperparathroidism or parathyroid disease. High calcium can be indicative of this. You can go to http://www.parathyroid.com/parathyroid-symptoms.htm they have a lot of excellent information. This is often missed as it was with me. Docs look at just the thyroid and not the parathyroid glands. Also, any calcium level above normal rates a second opinion. I wish you the best of luck.
    Anonymous 42789 Replies
    • January 13, 2007
    • 05:53 AM
    • 0
    Flag this Response
  • I would see the rheumatologist. They will at least take the high SED rate seriously and may have some ideas of what could be going on. They're used to seeing a lot of complex cases like yours. Good luck.
    Anonymous 42789 Replies
    • January 13, 2007
    • 06:23 AM
    • 0
    Flag this Response
  • HI. Thanks for the posts. I am going to my Primary Care Dr. on Wed. so I'll keep everyone posted. My husband's insurance changed and my strategy is going to be: I'm going to walk into the office and say, "Look....this is a new insurance company. They've not seen my records. Let's start from scratch and get me fixed." My husband laughs because he said his last insurance company probably threw a huge party when we dropped them and went to another. No, but seriously....I plan to seek the rhematologist's opinion. Esp. with the high SED rate. And I'm definitely going to look into the calcium levels again. I went to an Endo. and she sent me away because she said that the calcium levels were "back to normal". And nothing more was ever said of it again. But thanks for the feedback. Danielle
    Anonymous 42789 Replies
    • January 13, 2007
    • 07:21 PM
    • 0
    Flag this Response
Thanks! A moderator will review your post and it will be live within the next 24 hours.