Newbie and very confused
Hello and thank you for allowing me to join your group. My hope is to learn more about lupus which will help me know which questions to ask my doctor to lead to a diagnosis whether it be lupus or something else.
Here is a little history. I was diagnosed with Hashimoto's Thyroiditis about 15 years ago. I had my left lobe removed with a golf ball sized nodule back in 2004. At this time I tested positive for anti-TPO and another antibody which I cannot recall.
In July I went out of the country on a missions trip and returned with a mosquito borne virus called Dengue Fever. You have indescribable joint and muscle pain along with other symptoms. It does eventually run its course. However, the pain went away for a week or two only to return. With the Dengue it came in waves of pain but now it is more constant. My GP ran a few tests and only discovered that I was anemic and had low potassium. I was sent to an infectious disease doctor since I had been out of the country and my legs were covered in mosquito bites.
He ran two sets of lab work and sent me to a surgeon for a biopsy of the bites that are still on my legs months later. I am waiting for the biopsy and a cyroglobulin level test (which I had drawn but the hospital made an error and needs for me to come back to have it redrawn).
My first set of lab work revealed that I am still anemic; Hemoglobin and Hematocrit are low along with my MCV, MCH and MCHC all low, RDW high and my CD4 (helper cells) slightly high. My CH50 was also high and ANA test surprisingly was negative.
My second lab work revealed the anemia and other levels remained almost the same but this time my CH50 (total Complement) went from 61 all the way down to 25 (normal values are 33-60 u/mL). My sed rate modified by westergren is high at 33 (normal < or = 20 mm/h) My rheumatoid factor is a 7 (which is negative for active rheumatoid arthritis but wouldn't it be absent if there was no autoimmune/inflammation problem?) Again, my antibody test came back negative. Could it be the lab or I just don't have lupus or I am the 3% that do not have the antibodies? I am so confused.
The joint and muscle pain are horrible to the point that I cannot even pick up a gallon of milk. It is mostly in my fingers, wrists, right shoulder, arm and right ankle but I do have pain in other places. I break out in hive like rashes on my jawline, chest and back. I am tired all the time and at times cannot even remember which of my children I spoke to a few minutes prior and I get confused. (This is very unlike me.) I do not sleep well and wake up throughout the night. I get night sweats. I suffer from migraines and headaches. I just don't feel myself.
Non-related. I have severe allergies and suffer from asthma. My asthma had been under control and mild my whole life but in the past two years I have had pneumonia twice and ended up in the hospital with pneumonia and an asthma attack. My thyroid is also under control and I take synthroid.
I am sure that I am forgetting something. Thank you again and I look forward to your advice.
btw- I requested to go to a rheumatologist since the infectious disease doctor doesn't seem to know what to do and this is not his specialty.
Hello and welcome to our family;
Unfortunately, I am unable to say if you do or do not have Lupus or what your issues may be. However, many of your symptoms are also found in persons who do have Lupus. Lupus is an auto-immune disease and quite often, persons with the disease also suffer from other over-lapping auto immune diseases at the same time.
I am glad to hear that you have requested a rheumatologist. These are the doctors who specialize in auto-immune, connective tissue, and rheumatic diseases. I do hope that you find some answers from this doctor and are able to work with him to get a diagnosis and/or a treatment regimen. Please read through the "Stickys" on the top of each forum. You will find them filled with great information that may answer some of your questions. Otherwise, please feel free to ask us and we will do all that we can to provide you with information and answers.
Again...welcome to our family
Peace and Blessings