And It's About Time There Was Some Support For Cushing's!
Hello everyone! I've been lurking on your website for monthes after I inadvertently stumbled upon it. As with you all it has been a long journey. Gee, where do I begin?
I guess it technically started in 1999. I was becoming more and more fatigued, forgetful, my legs and arms often felt like lead. Losing my balance was common, I had tremors as well. At the time I weighed 113 lbs. (I am 5'1") My neurologist did many tests but did not come up with anything. Since I had seen a few other doctors who basically told me that either I was depressed or they implied that I had nothing better to do with my time than to run to doctors... (You know how that goes!) I just continued to trudge or stumble through life and keep pusing myself and pretending that I was just fine.
Well, I quit smoking my 1/2 pack a day habit, continued to eat healthy, walked/jogged/ran 3-4 miles a day on the treadmill and worked out with weights. This went o.k. for almost a year, but then I slowly started to gain weight, and even though I was doing crunches, my stomach was getting larger. Hummmmm....So I just worked harder at it.
Then in September 20003 I was up to 130 lbs even though nothing was different, I went to get on the treadmill one day and couldn't do it. I was so short of breath and my legs couldn't seem to keep up.
This began the search for answers which at this point are finally starting to come. As one friend put it, someone I work with and see every day, "it was like one day you just blew up".
I am currently close to 165 lbs. and have the Buffalo Hump, Moon face, upper body fat, etc. I do have Sinus Tachycardia, Osteopenia, APS (Antiphospholipid Syndrome), I was dx'd after a DVT in my groin (I can't think of the name of the artery) and am on coumadin for the rest of my life, as well as no premarin ( I had a hyster. in '94).
My previous Rheumy said that he thought I had Fibro, Sjogren's and possibly Lupus.
Well I went to see the Dr. of my dreams yesterday, 4/20/06. He spent so much time with me and did such a thorough exam and history. He said that I do not have Fibro. (he specializes in that) although I have tested 'normal' with my Thyroid, 3x, he believes that it is not working properly for ME. But he also said that he also is thinking that it may be adrenal. Anyhow, I am FINALLY on the right path, with lots of prayers from family and friends!
Sorry for the long BIO! I will add pics later! Thank you!
I am currently debating about going out of Oregon to the OHSU to See Dr. Ludlam. He seems to think that I may have Intermittant Cushings. I am very nervous about going out there and spending the money although we will HOPEFULLY get reimbursed 80% by our Insurance. I also feel on the other hand that if I don't go, I'll never get an answer and I won't get better. I'll call the Primary dr. this week and have him fax the referral. So here goes my very long, and boring story. Unfortunately, I've found that many people on this site and others have been through all this and MORE!
Let's see I will start at the begining...
1999 my weight was 125 lbs following back surgery
Fall 2000 went on slim fast and went down to 113 lbs. Felt great!
Winter 2001 :
the dibilitating fatigue starts as well as muscle weakness, tremors in my hands and neck and short term memory loss and word retrieval difficulties. I was so exhausted, that I could barely stay awake to drive home from school at 3:45 p.m., I come home, make dinner, eat with the kids and crash on the couch. I see a neurologist who performs, orders virtually any test he can think of to rule out MS, including a spinal tap which had me in bed for a week with a spinal headache, all the while vomitting for the entire 7 days. Thankfully it wasn't MS or any other major illness, which many that I was tested for were basically becoming completely incompacitated. At this time, although I was still doing the Slim Fast and eating almost the same thing (in variation) everyday and consuming the same amount of calories, I started gaining weight. I couldn't understand it.
I am up to 125 lbs. just totally baffled. My fatigue would come in waves with waves of insomnia added to the mix. The memory difficulties were still baffling I would be in the middle of a sentence with someone and would not know what even the topic was that we were discussing. My family was quite worried. I missed many of their appointments as well as mine.
The staff at the elementary school where I worked, decided to ask Weight Watchers to come in for 10 weeks. I was excited because I wanted to get this weight off since this was the highest I'd weighed since I'd had my children. Both my sisters had done WW and had great success and liked how it worked. This WAS IT!! It was THE Answer! I went to the meetings with my friends, and we supported each other, I was faithful my husband and I bought a treadmill, and I figured if I could ignore the other symptoms get this weight off, I would be golden. We'd go to the meetings, 2lbs, 5 lbs, 3 lbs. After ten weeks my grand total was.... ARE YOU READY? Drum roll Please.... 2 lbs!!!
Can you imagine how depressing it was, hearing that all this weight was coming off of everyone else? I talked to the WW lecturer, she coached me through this, but she was probably thinking that I wasn't as faithful to the program as everyone else. At this point in time, my symtoms had some what settled slightly, with the exception of the memory issues , insomnia bouts, muscle weakness and pain in joints. Fatigue would rear it's ugly head periodically. All the while, my wonderful family really tried to understand and pitch in. If they only knew what was coming.
This is when my body decided to rebel. Everything started almost simultaneously. My migraines began again, it had been almost 6 years, my GI symptoms started, dx'd IBS, the generic dx, when they don't know what else to tell you, Sinus Tachacardia, came, elevated BP for me anyway was 125/95, I usually ran 120/80 or lower, Acid Reflux, and then came Exercise Intolerance. One day I got onto my treadmill to do my usual walk/jog/run 3-4 miles. This was my way of rebelling against what ever was trying to claim my body and life. I was eating VERY healthy, lifting weights, using our home gym as well as doing crunches. I'd been into this rountine for almost a year and 1/4. I digress, one day I did get on the treadmill and I was short of breath, and my muscles felt as though they were jello. This was the last time I've truly been on the treadmill. I've made some attempts, but I just can't do it. I saw a pulmonologist and all tests were normal except for the fact that I have Oxygen Desaturation upon standing, which after a couple of office visits and tests that revealed no explaination, he wasn't to concerned in finding out the cause, and I was too tired to pursue it. Stairs became my enemy. Blow drying my hair became so difficult because of muscle weakness and shortness of breath. While cutting my husbands hair, I need to take breaks to regenerize my arms.
This is when the teacher that I had worked with for over a year, told me that "it was as if you just blew up over night." I went up to 160 lbs. with in a week or two. I also developed edema in my feet and calves, my face became red and VERY round, my veins were starting to peek through my stomach and breasts, I started getting coarse hairs on my chin, and breasts. Bruises would pop up out of no where. At this point, although only being 39 yrs old, I thought maybe this is what getting older is about. I knew I wasn't going through the change since when I was 28, I'd had a complete hysterectomy. I also started having difficulty swallowing, and my skin was drier than ever before!!! As wellas other areas. A rheumatologist dx'd me with Osteopenia, and "most likely" Sjogren's syndrome, which is where your immune system attacks your moistur-producing glands.
The third to last day of school, I woke up, went to work, left at lunch to bring my daughter to a final exam, went back to school, and felt AWFUL!!!! I just sat correcting and filing papers, I got dizzy felt sick and couldn't make it through the rest of the day. The following morning I went to the doctor and he said he thought I had a blood clot. I chuckled and said, "I don't think so" He said me for a ultrasound of my groin and right leg, since severe swelling and redness was present. DAMN IT! He was right!!!!! A DVT. Deep Vein Thrombosis of what ever artery is in your groin, I can't remember. I was then dx'd with AntiPhospholipid Syndrome and the Lupus Anticoagulant. No, I do not have Lupus, that had definitely been ruled out. I will be on Coumadin for the rest of my life.
So that is the story!
