Discussions By Condition: I cannot get a diagnosis.

undiagnosed in Kentucky--Please Help!

Posted In: I cannot get a diagnosis. 0 Replies
  • Posted By: Anonymous
  • December 22, 2006
  • 04:41 AM

I am a 38 year old woman living in central Kentucky. I have been very ill since August of this year, and have not been diagnosed yet. Prior to August, I was working as an Accountant (for the past 9 years) at a local mfg company and attending a local University (finishing my Accounting degree). Now my life has come to a complete stop. I had to drop my classes and I have not worked since Sept 29th. I am usually a "go-getter". I enjoy my work and thrive at my studies. However, since I've become ill, I am running out of medical options and my place of employment is ready to replace me.

Some history on me: I have been married for 16 years. We have no children, as I was unable to get pregnant. I have been diagnoses with the following diseases/illnesses: Polycystic Ovarian Syndrome, Hypoglycemia, Hypothyroidism for the past 6 years--and then Hyperthyroidism in August, TMJ, low back injury, and left shoulder injury


I have had the following surgeries/illnesses/accidents:1975 Tonsillectomy; 1988 Injury-Former boyfriend tossed me across the room, my lower back hit the bed frame, bent the metal frame to the floor, this also broke my 5th lumbar vertebrae; 1995 Surgery-Tore left ACL, was not repaired only cartilage; 1996 Pleurisy in left lung; 2005 Began having severe pain in between my left shoulder and my neck; 2006 Surgery-Left knee scoped again, ACL functioning at 30%, not repaired, knee has not recovered well from this surgery.


The current problem: August 11, 2006 I had not been feeling well for a couple of days, I but couldn’t put my finger on what was wrong. Earlier that day, I had a severe bout of dizziness in the copy room. I thought maybe it was due to my neck being out of alignment. At bedtime I took ½ of an Ambien (5mg). Within 3-5 minutes, I felt like I was having an extremely bad reaction! Immediately, my heart was racing, I had “running” skin, I was shaking uncontrollably and my teeth were chattering so badly that I bit my tongue. I also was having shortness of breath. The next day I felt very disconnected, strange, and sick when I woke up. Different than I’ve ever felt before. As the day progressed, I felt worse and I kept having feelings of what I would describe as Adrenaline rushing into my stomach – kind of like when a car pulls out in front of you. I felt running chills and hot and cold alternating feelings in my legs and arms. I also had some prickling, burning feelings in the back of my head and down into my shoulders and arms. Later that evening, I went to the Instant Care. My blood pressure and heart rate were very high. He told me to quit taking my thyroid medicine until I could get it checked by my doctor. The next day I was no better. I could barely stand to be in my own skin. My heart was pounding and racing periodically. I went to the ER later that night. He also told me not to take my Thyroid medicine. I went to my doctor the next day. TSH came back at 0.17 and I haven't taken my medicine since. Now, my TSH shows completely normal-the last reading was 1.03.


To make a VERY long story shorter, here are the symptoms I have had since August (to varying degrees): Anemia–this has been a constant since I became ill in Aug. My blood work showed the following: Ferritin 3 (low); Iron 23(low); Transferrin Sat 4(low); Total FE Bind Cap 531(high); Mean Cell HGB 24.9(low); Mean Cell HGB Conc 30.9 (low); Hemoglobin 11.0(low). Thyroid-I had been on thyroid medicine for 6 years. After I became ill, my physician took me off of my medicine. My TSH has been the following: 0.17 on Aug 14th, 2.01 on Sep 7th, and 1.03 on Nov 16th, still no medicine. In addition, a small 4mm X 5mm nodule was found on the upper right lobe of my thyroid, but I have been told that this is nothing to be concerned with. Tachycardia/chest pain–this was extreme during the months of Aug and Sept, however, since then the tachycardia has been sporadic and less frequent. Now my heart only seems to go over 100 beats per minute at various times daily. The 24-hour heart monitor I had in August showed that my heart got up to 160 beats per minute at one point. High blood pressure–onset was sudden in Aug. However, now my blood pressure gets too low at times (90/56). Odd, unclear feeling in my head. Since I first became sick, I have never regained metal clarity. This is a Constant symptom, which is quite uncomfortable. I also have trouble concentrating sometimes. This is the main reason I am not working at this time. Very cold hands and feet-this onset was sudden, and has persisted. Extreme Fatigue–this was a sudden onset when I first became ill in Aug. Stomach pain–this symptom has been sporadic. Sometimes my stomach has quite severe pain in various areas, and sometimes it doesn’t hurt at all. I have recently had quite a bit of pain in the upper part of my stomach, right below the sternum. More recently, I have had quite sharp pains in the upper left portion of my abdomen. Shortness of breath–this also was a sudden onset in Aug, and has diminished over the past few months. Swollen Lymph Nodes(I think)–this symptom developed around November 8th. The swelling, tenderness, and firmness of the lymph nodes on the insides of my elbows has come on suddenly and they are quite uncomfortable. Joint pain–this is a very new symptom that came on suddenly on November 10th. I woke up with joint pain in my elbows, knees, and shoulders. The elbows hurt most of the time, and it’s been about 4 weeks now since the onset.Menstruation problems–I have been very regular, like clockwork, for the past 2 ½ years – every 28 days. However, now it is erradic. Skin changes–this symptom has been getting gradually worse. Sometimes at night, you can see all of my veins in my arms, legs, torso and chest. My skin almost looks translucent at times. Also, sometimes I get red and white splotches all over my skin.Shaking and trembling–this happened when I first got sick, and has all but subsided now. On few occasions I will still feel a bit shaky, but nothing like I did in Aug and Sept.Racing feelings under my skin–this was a sudden onset in Aug. It felt like I could literally feel my blood racing under my skin.


If you are still reading after all of this, bless you. I know this is long, but I seriously need some help.


The doctors: I have seen 4 Endocrinologists (1 at Johns Hopkins and 1 at the Cleveland Clinic), 2 Cardiologists, a Hematologist, a Neurologist, a Gynecologist, and my family physician. I am scheduled to see a Rheumatologist and a Gastroenterologist.


The only thing they have found so far is the Anemia, and the original Hyperthyrodism. The most recent Endocrinologist I saw on Monday said I also have Dysmetabolic Syndrome X.


However, nothing has been diagnosed that would explain why I have these horrible feelings in my head and body. It feels like my body is being attacked from the inside. I feel like something is literally under my skin.


I don't know if I have a virus, bacteria, or disease.

I have had MRI's and CT Scans from my head to my lower abdomen, and they have found no tumors, which is great, but I still don't know what's wrong.


If anyone has any idea what this might be -- no matter how remote the possibility -- PLEASE let me know. At this point, I don't even know which direction to look. Since I haven't been diagnosed, my very not-nice boss thinks I've lost my mind. I told the doctors that if they thought this was a mental problem, that's fine -- lets just get it diagnosed and get treatment started. However, that's not where the problem is.

PLEASE HELP!!!! :confused:

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