And It's About Time There Was Some Support For Cushing's!
Hello New Friends, I've been lurking at this site for the past few days trying to glean as much information as I can about what is happening to me. My name is Linda and I'm a 46 year old Caucasian from America who has spent more than half of my life in Japan. I am married to a Japanese. Right now I'm feeling part of some kind of a classic joke -- go to the doctor over a fallen arch and discover you probably have a tumor in your brain!
For nearly a year I've been having a problem with my left foot but just never went in to the doctor to have it checked out. First I noticed 2 long bones leading to the toes were painful, but then later the bottom of the heel of my foot, and sometimes the outside of the heel, started to hurt. Limp, limp...Sometimes I would awaken in the middle of the night from a sound sleep due to the pain. Usually the pain was there upon waking, or after sitting some time, or at night. During the doctor's office hours the pain would be absent so I kept neglecting to investigate the problem. Anyway, the local orthopedic doctor, at a clinic 2 blocks from my home, has generally told me that every backache I've had in the past 10 years is a result of the fact that I'm not as slim as I used to be. (I've had herniated disks and been given a corset which I use during really painful times.) Now that I weigh more than I did at 9 months pregnant, I just didn't want to hear anymore about my weight! I don't drinks colas, don't like oily dressings and eat most vegetables raw or lightly steamed, don't like greasy foods in general; instead I follow the Japanese diet of grilled fish, tofu, plain rice, and a heavy emphasis on vegetables and fresh fruits, and have the occasional steak, plate of spaghetti, or other comfort food of my childhood days in America. But, I confess to a sweet tooth and thought my love of chocolate might be my downfall in the weight game! I used to be a very thin person and had trouble gaining weight. Sometime in my 30s I started to put on weight with the general change of metabolism. I think I weigh perhaps 15 pounds more than I did 3 years ago. Although I haven't experienced as much of a weight gain as others here have written about, they don't sell sizes larger than 14 here, and even that is very hard to find!
The Japanese medical system is totally different from what Americans are used to. On the plus side, just about everyone is covered by national health insurance here and can chose where we want to go for a doctor's consult. Costs are minimal compared to America, but services aren't as grand. Japan doesn't have general practitioners like America does. Doctors seem to all be specialists here. Some doctors open their own small clinics where they rule as king. Generally, I think clinics are best avoided though and head off to the outpatient section of a city hospital. Clinics have longer consult hours, but can not do specialized testing other than x-rays, and probably even need to send out blood work. Furthermore, there are no watchdogs over a doctor at his own clinic such as there are at an outpatient section of a hospital with numerous doctors having office days. Outpatient hospital sections have consult hours between 8 and 11 a.m. The doctor will see as many patients as arrive during those hours regardless of an appointment. If 100 patients show-up on any given morning, then he will see that many before he has his lunch. One quickly learns to make their reason for coming concise and be willing to wait several hours for their turn of a few minutes. Hospitals (in-patient) routinely have 6 to 8 beds per room. Hospital rooms generally don't have a toilet, or a sink, or any bathing facility in the room. One TV can be found in a lounge area along with a pay phone. Sheets are usually changed once a week. But the cost of being a patient per day is generally less than the cost of a hotel room. Frankly, I'd still rather stay in a hotel with clean sheets, gourmet food, and room mates of my own choice! :-)
As I mulled over going to the nearby orthopedic clinic vs the city hospital to have my foot problem investigated and weighing the probable chiding over my continued weight gain against the 8 hour wait I had on my last orthopedic visit at the nearby city hospital, I developed a new problem. My index finger became swollen and the joint quite painful. For several days beforehand I had been having pain in the long bone leading to that finger. I also was having pain in my wrist. I had noticed pain in the same long bone about 6 months beforehand and about 2 months before the joint in the same finger had been painful for a few days. I rose garden and had seen a small thorn at the joint the first time and thought I might just have injured myself so quickly forgot about the problem. This time the sore joint had sealed my decision to go to the city hospital, though. I had been reading online about foot problems trying to figure out how to explain the pain and what might be the problem and realized that I might need something more than a simple x-ray to diagnose it.
Thirteen days ago I went to the doctor. While there, I decided to ask about my neck. I thought I might be getting early osteoporosis. Many elderly Japanese women have the most horrifyingly bent backbones and it's not uncommon to see an old woman with her head bent down to her feet still out doing her daily shopping. With a history of back problems over 10 years, could the same thing be happening to me I wondered.
I told the doctor I wished to ask him about 3 problems and started out with my index finger. Then I told him about my persistent foot problem. Finally, I lifted my hair and asked him if I was developing osteoporosis. He got up from his seat and came around to look at my neck, felt it, said it wasn't bone but rather fat and used the word "tumor" in English as he was talking to me. My thoughts about that were lost though when he started talking about rheumatoid arthritis and how it generally affects both sides of the body at once. He sent me off for x-rays (9 in all). When those came back he viewed them and said fortunately there is no joint damage yet in my hands. He could see the bones compressing in the lower spine. As for my foot, after seeing me walk and looking at the bottom of them and doing a few tests he decided I had a fallen arch and talked to me about the tendons in the foot and so on and suggested I be careful about shoe selection and that would ease the pain. He viewed the x-ray of my neck again, manipulated it quite alot to see about pain, and again said it was fat filled. This time he used another term in English "buffalo hump" Gee, is this some new and unkind way to tell a woman she is getting fat, I wondered?! He sent me off for a rheumatoid blood test and made an appointment for me to have a DEXA x-ray of my spine some days later, and made an appointment for me to return on May 1 as that would be his next office day after the DEXA appointment. He also wrote me a prescription for the NSAID Mobic.
I went home and got on the internet to read up on rheumatoid arthritis and Mobic. Three days later I woke up to very swollen eyelids and recalled seeing something about that on the Mobic side effects site I read recently online. YIKES, a rare allergic reaction?! I headed back to the hospital to ask before taking the next dose. This time I had my first confrontation with pro-active medical care as I first had to tell the nurse what I was there for, one-hour into my wait. I told her about my eyes and she said they weren't swollen now. I told her I had read online about the possible side effects and she was flabbergasted that a patient would do such a thing! Hey, I can't read the Japanese characters on this printout the pharmacy gave me I told her. Up until a very short time ago, patients were given "mystery medicine" -- generally granule form and in a waxed paper packet with no name, and no information other than how often to take the dose. We've reached the 21st century here too, so now I get a color copy printout of a photo of the medicine, it's name, along with a short explanation for what it is for, along with how many times a day to take the dose! Ah, modernization! There' still no information about side effects, though. :-( The nurse called the in-house pharmacy to ask about my concern, though. They agreed it was a possible side effect so she asked if I'd like to see the doctor on duty to have him write a new prescription as my doctor of the other day wasn't in. I waited 2 more hours to see the doctor on duty. As we sit in groups of 4 or so patients when our name is finally called, and the doctor is sitting behind his desk in a curtained off area, I was able to hear how this next doctor interacted with his patients and formed the opinion he was hungry for his lunch and clearing off as many patients as possible! The in-house pharmacy had agreed that I should change as this was a possible side effect and given a suggestion of a different Japanese brand medicine I could use in it's place. He took a brief look at my blood work and said that it had come back negative for rheumatoid so I "must have been having a bad day the other day" and told me to come back in again for my appointment on May 1, but wrote the new prescription. From reading online I had already gleaned that I could still have a 20%chance or so of having rheumatoid arthritis but maybe I was in the clear.
So I turned my attention to the meaning of "buffalo hump". I had heard of "dowager's hump" and thought that was what I had. Once online I realized that since I don't use steroid medicines, and I'm not extremely obese (as defined by 100 pounds overweight), then all roads lead to Cushing's. No wonder the doctor used the "tumor" word! That had been lost in my memory bank when I heard rheumatoid! So I'm 72 hours away from my next consult with the doctor and wondering what happens next. The hospital I went to serves a city of 70,000 so I imagine that certainly I will be directed to a larger one. I doubt if they even have an endocrinology department there.
The past couple of years have been filled with family concerns of the crisis mode and I haven't been paying much attention to myself. I feel so thankful right now that I accidentally chanced upon a highly astute doctor! As I've been reading over the past few days I've been experiencing Cushing's symptoms for a year or more, but nothing connected into anything I'd ever heard of before as a warning sign to a serious illness. In January, I went to the internal medicine section to consult about a cough I had for 6 weeks, it felt as if I had 3 colds one right after the other. He asked me if I'd been skiing recently. The doctor there said I was on the mend but he was more concerned about the redness of upper chest and neck and told me I should probably consult dermatology if it didn't clear up. I wear a lot of turtlenecks and although I sunburn easily no I'd been too ill to be playing outside. Internally I was scoffing at this doctor who had never seen a rosy complexioned Caucasian!
I went home and looked in the mirror and saw that indeed my neck was patterned on both sides and the front was white but couldn't that just be surface irritation? The redness never went away. Out shopping one day I caught my reflection in the stark bright lighting and was shocked that my face looked bright red, it couldn't possibly be sunburn as it was in the middle of the winter. I've had pain off and on in the long bone of my leg too, but reading up on bone cancer it didn't fit the symptoms so I wrote it off as a general ache and pain of no consequence. My weight gain is in my neck, back, and belly. Sometimes I feel so breathless after the least exertion and wonder now if that is related too. At night I've often noticed my heart racing and thought it must be perimenopause. Due to my foot pain I'm not out walking as much as I once did routinely so I've been writing off what has been going on as being out of shape. I, also, have a hobby that requires a lot of sitting so my concentration had been on it. My hobby was the only way I could deal with the other crises going on around me too. So I just wasn't finding the energy lately to be the meticulous housekeeper that everyone knows me to be.
Except for the cultural differences in medical care, does my story sound familiar? I suspect we all will becomes good friends soon. I wish each and every one of you well regardless. What an incredible challenge life has thrown Cushing suffers. I've already proven myself to be a one in a million kind of person by marrying a Japanese. Now I'm wondering if I should go buy a lottery ticket and maybe pick up one for the doctor who gave me the word "buffalo hump" too.
I hope to hear from some of you soon.
Best wishes all.
Other concerns: fibro-cystic breasts. A very weak bladder -- zillions of toilet trips a day. I took medication for that for a year but it didn't really help much so gave up last year. An enlarged ovary. A couple of months ago a CA125 blood test came back at 43, I now understand that 35 is the limit of no concern. The doctor told me to have it retested in 6 months.
Dental work: A back molar started to hurt. An x-ray taken 2 weeks ago didn't pick up any alert to the dentist's eyes so I was back in under a week when it really started to hurt when eating. He said I'd need a crown now and removed the old large filling and packed it in a short term filler to wait out the nerve situation before deciding on root canal or not, as well. While there he told me 3 or 4 times to go on a diet! Sheesh... He also was forcing me to sit just so while manipulating my head and spine, so I wouldn't end up bedridden from poor posture! Sheesh... He's a good dentist (extremely hard to find in this country) but far too temperamental! So I'm now worrying about the molar when I don't know what's going to happen next with probable more tests in regards to what I now think must be Cushing's. My next dental appointment falls one week after the doctor appointment. Sigh...
