I decided to go back to my GYN having it only been weeks since my Hysterectomy. I had been taking Estrogen and thought my symptoms might be associated with the hormone.
My doctor asked if I had any auto-immune disorders on my side of the family. My mom was told she had Lupus and some other connective tissue problems, so with that in mind, my doctor decided he should do some bloodwork. A few days later, the results returned normal. I shrugged it off hoping things would eventually get better.
Six weeks later, things worsened. It was obvious something was definitely wrong. This time I decided to see my family doctor. He ran some x-rays and also repeated bloodwork. The results showed an elevated titer with a positive ANA, speckled pattern. He felt, given my medical history, I should see a Rheumatologist.
I saw the Rheumatologist two months later. He also repeated the bloodwork. He suspected a connective tissue disease. He felt it could be possibly Rheumatoid Arthritis and/or Lupus SLE. He explained that patients with the type of symptoms I had, would often need to wait a while to get a formal diagnosis. He stated it takes some time to gather information necessary to know exactly what is going on with an illness like this. He wanted to name my illness Undifferientiated Connective Tissue Disease, in the meantime. He put me on some anti-inflammatory and anti-malarial medication and wanted to see me back in three months.
The following months were tough. My symptoms seemed to rage out of control. Not only did I have the same symptoms as listed above, but now I was beginning to have trouble breathing, having nausea, vomiting, migraines, mouth sores, hair loss, intestinal trouble, dizziness, cognitive trouble, rashes on my face and thighs, and a horrible burning sensation within my blood vessels. My temperature always seemed to stay between 96.6 and 97.3 degrees.
My symptoms began inteferring with my job. The doctor prescribed steroids to try and bring things under control. I would begin doing fine and then be blasted with symptoms all over again. I seemed to be losing control of my life and feared losing my job.
After about six months, my medications finally leveled things off. It also helped that I resigned from my job to allievate some of the stress. Increasingly over time, my doctor added new medications to the ones I already had. I began taking things one day at a time and was doing much better. I returned to work part-time.
It's been four years now, and I still take things one day at a time. I have had to see a couple of different rhematologists because of insurance changes. Each one tends to call this something different. I suppose one common diagnosis is that I have some type of Connective Tissue disease going on. Presently I'm looking at UCTD, Lupus SLE, and Sjogren's Syndrome.
Whatever name they like to call this, it's important for me to remember that God holds all things in His hands and that nothing happens to me that He doesn't know about. Although I may feel great frustration with the changes that have occurred with my health, one thing remains the same. God is in control! I find my strength in Him daily, and have learned to lean on Him to see me though my darkest hours. I never walk through this disease alone!.
My disease had done fairly well the past six or so years being managed by the Lodine XL, Camoquin, and Flexeril I was taking daily. The past year though, I began feeling more uncomfortable despite adding another 600 mg. of Lodine XL last July, making that total 1800 mg. a day.
On December 12, I had a routine rheumatology exam in which my doctor decided the "magic" had stopped. So he pulled me off the Camoquin (anti-malarial medication) and put me on a dose pack of Prednisone for six days, along with beginning Imuran (100 mg. a day). The Lodine Xl is being temporarily held until I finish the Prednisone.
Presently, it's hard to say whether it is helping or not. I developed a horrible headache the first couple of days on the Prednisone then a rash on my cheeks the second day of taking the Imuran, but other than these, I'm only feeling a little more tired. Perhaps it will take a few weeks or months until this gets in to my system and begins working.
February 2002
After monthly blood tests lab results indicated that my red blood count had dropped to 10.6. My rheumie has suggested I see my family doctor to determine or rule out internal bleeding.
March 2002
Lab work showed my white blood count had dropped. I'm beginning to feel very weak. The doctors have also learned from Xrays taken in December that I have early signs of degenerative disease with calcium buildup in the arteries along my spine. The chest xray was clear but the spine film showed calcium build up in blood vessels.. They have recommended I have further blood work to look more closely at my lipid panel and they did a Homosystine measure.
Things are going better with my energy increasing. I have had a few "new" symptoms which may be associated to the Imuran. This would be a deep pain in the center of my stomach, mostly felt through the back. It comes and goes so it may be something that goes away after awhile. The nasal or mouth sores have returned along with pain in my blood vessels. I will mention these to my doctor during my next appointment.
October 2003
Rheumatologist is moving to Alabama. Will be seeing someone new.
Well, I had a rheumie- check up back in July but because of our daughter's wedding...never got around to updating my webpage. Everything was going fairly well, with the exception of increased exhaustion, and there were no changes made to my medications.
August 26, 2004
I had another routine checkup. I was told my lab results from July were okay..that my blood counts were staying in the "3's" . On this visit we mostly discussed my increased trouble with dry eyes and difficulty swallowing food. I have now been put on Evoxac to help with Sjogren symptoms. I had other problems the past couple of months that included side pain under my ribcage..also sometimes felt in my back, and increased headaches and chest pain, but there was only time to bring up one problem. Anyway...I came away hopeful that I might get rid of my blurred vision, burning sore eyes, and dry mouth with this new drug. I just hate that my pocketbook constantly has to be hit hard in order to feel anywhere close to normal.
This past week I have had a bad spell with symptoms. I don't know what has triggered this flare although it could be that I got a little too much sun one day while taking a walk, or over-exerted myself another day working in my yard...or quite possibly even because I've started this new medication. Whatever the trigger...I've developed new and different symptoms. This time I have developed lumps under the skin in various locations all over my body. There is this sensation of having bruises everywhere especially in those lumpy areas. I have also had trouble moving or even resting...shoulders hurt quite a bit, back is unbelievably uncomfortable, and every joint feels swollen. This is day 5 of this recent flare and things don't seem to be letting up.
My next appointment with the rheumie will be in October.
January 2005
It has been a rough few months lately. In October I returned from our cruise with a toothache under one of my crowns.. No biggee. I thought whatever the problem was would be simple enough to take care of. My dentist x-rayed the tooth and didn't see any abcess, so he just put me on Amoxicillen to clear it up. A few days later it was worse. So he scheduled to have me come in so they could pop off the crown and take a look under it, and in the meantime prescribed Clindamyacin. So when they popped off the crown they determined the tooth needed to come out. Years ago when it had a root canal done to it, the tooth had calcified and they couldn't get out all of the root. Obviously, it was problem now. After extracting the tooth they discovered a tiny abcess on the root of the tooth. They then put me on Amoxicillen again.
After I completed that drug, two days later I began noticing pain in my stomach. I thought I had a bladder infection. I was uncomfortable all through that weekend but saw the doctor the next Monday. I really felt horrible. I was running a temperature, was having stomach trouble and could hardly move. I hurt pretty bad. The doctor ran a few tests and found that my white blood count was elevated, I had traces of blood in my urine and bacteria. So he put me on Levaquin...another antibiotic. Two days later and I was still feeling bad and noticed blood and other problems with my stomach. The cramping was like none I have ever experienced before. I struggled with who I needed to see to get this problem solved.
I ended up seeing a gastroenterologist. He was pretty certain I had developed antibiotic induced colitis...otherwise having the Clostridium Difficile toxin, brought on by taking at least six weeks worth of antibiotics. He ran a test but it came back negative. He put me on Metronidazole and symptoms began going away. Even though the test returned negative, my doctor was fairly certain this is what I had.
So...I thought I was on my way back when two weeks later I began seeing blood in my urine. Lots of it. I went back in to have a urinalysis done. That test determined bile was in my urine, along with blood, and bacteria. He was concerned that my liver and/or kidneys are functioning correctly. So my doctor wanted to do an IVP to rule out kidney stones. That test returned negative for stones. He suggested having a CT Scan done of my abdomen or seeing a specialist, but we are taking a wait and see attitude for now. He put me on another antibiotic Cefadroxil 500 mg. That is where I'm at today....still on this drug. I still have pain in my left kidney area but am wondering if it might be something else in that same area instead of my kidney.
It has all been frustrating, having repeated infections and not knowing who I need to see for what.
August 2005
Insurance changes. Will be needing to see a new rheumatologist.
Water-ski accident (torn hamstring)
Got up one last time after I healed and decided to hang up my water skis.
Stopped working at the church to care for Mike's mom and our new grandson.
January 2006
Given a Flu and Pneumonia vaccine. Had a bad reaction to both. Flared for 3 weeks.
March 2009
I see my rheumatologist every 18 weeks now. I presently have been diagnosised with UCTD (Undifferentiated Connective Tissue Disease), Fibromyalgia, Osteopenia,Vitamin D Deficiency, and Anemia. I take 20 pills a day to help keep my disease and other problems under some kind of control. One of them, Immuran, is an immunotherapy drug which needs to be monitored with blood tests every six weeks. Stress, sun, and pushing myself too hard causes me to flare (which just means my symptoms become aggravated) and can keep me down for days, or even weeks. Some days I flare for no reason at all. I've been learning how to live with these problems for 14 years. My next blood test is April 20th. My next rheumatology appointment is June.