29th October 2006
I feel like I’m dying most days.
I cannot withstand ambient temperatures above 75’. I can’t do *any* aerobic exercise without throwing up and fainting. I found that smoking keeps my BP right in the 100/65 range. Without it I faint every time I stand up without it. My skin is turning blotchy. I have dark pigment all around both my eyes and now it’s starting to look like I have a ring of dirt around my neck. For over a decade I’ve gone to drs to address brown splotches in the creases of my body. Some say it’s normal, one said it was a fungal infection (that didn’t itch or cause discomfort) and had me using a cream for months. (no improvement) The best one was when I was told they were birth marks. That developed in my 30’s. Riiiight! About 7 yeras ago I developed bluish spots on my labia and my arm pits and groin have a darker tan than the rest of my body, but it's not shockingly dark.
My heart races, misses beats, tries to thump out of my chest. The 100-120 range is normal for me, but it does go up as high as the 180’s. I’m weak and shaking most of the time. Sometimes it gets so bad that I can’t lift a coffee cup or go to the bathroom without help. I have had diarrhea every day for four years. My son is a T1 diabetic. A few times a week I’ll turn white, get dizzy and start throwing up. He cares, so he does for me what I do for him when he gets sick and tests my blood glucose. Frequently, in the last year, I was surprised to find myself in the 60’s. For years I felt much better around 10 PM than at any other time. This is still a trend, but I can now go for months without that evening boost.
I don’t do much, but my body appears well-muscled. I’m rarely hungry, but I eat all the time to settle my stomach. (I find that carb grazing helps my BG and relieves the nausea for 15-20 minutes. But if I eat too much, I start throwing up and the heart runs off again.) The grazing keeps my weight up.
Brain fog, irritability, depression hits hard, but only last a few days at a time.
All of this points to Addison’s but there are a few things I’m not really sure about.
I also have symptoms that I’m not sure fit. I have muscle spasms and cramps all the time. When I begin and exercise program I usually only last a couple of days, then I get a really bad attack. My heart will race (186+) and eventually *everything* starts to tingle. Then I loose control over my arms, legs, and face muscles. Everything “draws in”. My hands curl in, even my feet do. My mouth tightens into an “O” and I can’t move my lips. When this happens I don’t loose consciousness; but I know, with a calm certainty, that I am about to die. I have found ways to avoid this (for the most part) over the years. If I start to tingle or feel weak I STOP everything as soon as I feel there’s a problem. I rest every muscle and think calm thoughts. I avoid the sun like a *******. I time my showers so I don't get over-heated. When I get a severe attack the ambulance is called and the ER always tests my potassium. The first attack I was low K. After that, all of them have come back high or normal. After the first attack (13 years ago) I was diagnosed with hypokalemic periodic paralysis, but most drs disagree with that diagnosis.
If I get a virus, I’m down for up to 2 months every stinkin’ time.
I had an abnormal EMG indicating peripheral neuropathy and blunted reflexes in my legs. I have horrible flare-ups of pain that my neurologist attributes to fibroneuralgia.
A few months ago my allergist gave me an injection of Kenalog for my asthma. Within 2 days I felt better than I have in years. Every symptom went away. For the first time in 17 years I was fully functional. My heart-rate dropped to a resting of 66-72 BPM. (NEVER HAS IT BEEN THAT LOW.) The palpitations stopped completely. My BP went up to the 120’s-130’s/70’s. Even the brain fog cleared. I swear my IQ jumped by 30 points. I was absolutely shocked to have normal bowel movements. (Actually, disturbed might be a better word!) I lost weight without trying, which was easly without the nausea. The relief lasted about 6 weeks, then tapered off until I was back to using the cane and wheelchair.
My dermatologist had me tested for Addison’s 3 years ago and my cortisol levels were normal. I fasted, they drew my blood in the morning and that was it. My new dr is telling me that it takes days to do the test and that it’s a long process. She wants to wait until the Kenalog wears off, but I don’t know how long we should wait.
I got the second shot 10 days ago and the results were the same, but I think this one is wearing off faster. I'm not positive, but I think I just have the flu right now. Many of the symptoms are parallel to my weird attacks, but my BP is 128/75. That tells me that the Kenalog is still doing it's trick. With such an impressive reaction to the steroid shot, the drs and now thinking Addison’s. I’m tending to agree with them, but I’m really scared. See, my mom has Grave’s Disease and my aunt has hypothyroidism. Both of them were symptomatic for decades and tested multiple times for thyroid dysfunction, but every time the test was normal. They were both in their 50’s before an abnormal thyroid test surfaced and they could get treatment.
I’m so sick and tired of being sick. I’m scared that it’s not Addison’s and we won’t find out what’s wrong with me until the autopsy. I’m scared that the test won’t show up even if this is the problem. And I’m scared of dying and I don’t know how I survived the birth of my son all those years ago. (My BP was in the shock range for months. I lost 50 pounds in the 5 days after his birth. The docs had me go to the hospital to get an IV of saline three times a week for two months until my BP stabilized.) I’m scared of letting the steroid shot wear off to take the tests. I don’t know what to do.
So here are my questions: Are my weird symptoms consistant with Addison’s? Would Addison’s even respond to Kenalog?? How long should we wait to allow the Kenalog to wear off before doing the test? Should I get the ACTH or the ITT?
I cannot withstand ambient temperatures above 75’. I can’t do *any* aerobic exercise without throwing up and fainting. I found that smoking keeps my BP right in the 100/65 range. Without it I faint every time I stand up without it. My skin is turning blotchy. I have dark pigment all around both my eyes and now it’s starting to look like I have a ring of dirt around my neck. For over a decade I’ve gone to drs to address brown splotches in the creases of my body. Some say it’s normal, one said it was a fungal infection (that didn’t itch or cause discomfort) and had me using a cream for months. (no improvement) The best one was when I was told they were birth marks. That developed in my 30’s. Riiiight! About 7 yeras ago I developed bluish spots on my labia and my arm pits and groin have a darker tan than the rest of my body, but it's not shockingly dark.
My heart races, misses beats, tries to thump out of my chest. The 100-120 range is normal for me, but it does go up as high as the 180’s. I’m weak and shaking most of the time. Sometimes it gets so bad that I can’t lift a coffee cup or go to the bathroom without help. I have had diarrhea every day for four years. My son is a T1 diabetic. A few times a week I’ll turn white, get dizzy and start throwing up. He cares, so he does for me what I do for him when he gets sick and tests my blood glucose. Frequently, in the last year, I was surprised to find myself in the 60’s. For years I felt much better around 10 PM than at any other time. This is still a trend, but I can now go for months without that evening boost.
I don’t do much, but my body appears well-muscled. I’m rarely hungry, but I eat all the time to settle my stomach. (I find that carb grazing helps my BG and relieves the nausea for 15-20 minutes. But if I eat too much, I start throwing up and the heart runs off again.) The grazing keeps my weight up.
Brain fog, irritability, depression hits hard, but only last a few days at a time.
All of this points to Addison’s but there are a few things I’m not really sure about.
I also have symptoms that I’m not sure fit. I have muscle spasms and cramps all the time. When I begin and exercise program I usually only last a couple of days, then I get a really bad attack. My heart will race (186+) and eventually *everything* starts to tingle. Then I loose control over my arms, legs, and face muscles. Everything “draws in”. My hands curl in, even my feet do. My mouth tightens into an “O” and I can’t move my lips. When this happens I don’t loose consciousness; but I know, with a calm certainty, that I am about to die. I have found ways to avoid this (for the most part) over the years. If I start to tingle or feel weak I STOP everything as soon as I feel there’s a problem. I rest every muscle and think calm thoughts. I avoid the sun like a *******. I time my showers so I don't get over-heated. When I get a severe attack the ambulance is called and the ER always tests my potassium. The first attack I was low K. After that, all of them have come back high or normal. After the first attack (13 years ago) I was diagnosed with hypokalemic periodic paralysis, but most drs disagree with that diagnosis.
If I get a virus, I’m down for up to 2 months every stinkin’ time.
I had an abnormal EMG indicating peripheral neuropathy and blunted reflexes in my legs. I have horrible flare-ups of pain that my neurologist attributes to fibroneuralgia.
A few months ago my allergist gave me an injection of Kenalog for my asthma. Within 2 days I felt better than I have in years. Every symptom went away. For the first time in 17 years I was fully functional. My heart-rate dropped to a resting of 66-72 BPM. (NEVER HAS IT BEEN THAT LOW.) The palpitations stopped completely. My BP went up to the 120’s-130’s/70’s. Even the brain fog cleared. I swear my IQ jumped by 30 points. I was absolutely shocked to have normal bowel movements. (Actually, disturbed might be a better word!) I lost weight without trying, which was easly without the nausea. The relief lasted about 6 weeks, then tapered off until I was back to using the cane and wheelchair.
My dermatologist had me tested for Addison’s 3 years ago and my cortisol levels were normal. I fasted, they drew my blood in the morning and that was it. My new dr is telling me that it takes days to do the test and that it’s a long process. She wants to wait until the Kenalog wears off, but I don’t know how long we should wait.
I got the second shot 10 days ago and the results were the same, but I think this one is wearing off faster. I'm not positive, but I think I just have the flu right now. Many of the symptoms are parallel to my weird attacks, but my BP is 128/75. That tells me that the Kenalog is still doing it's trick. With such an impressive reaction to the steroid shot, the drs and now thinking Addison’s. I’m tending to agree with them, but I’m really scared. See, my mom has Grave’s Disease and my aunt has hypothyroidism. Both of them were symptomatic for decades and tested multiple times for thyroid dysfunction, but every time the test was normal. They were both in their 50’s before an abnormal thyroid test surfaced and they could get treatment.
I’m so sick and tired of being sick. I’m scared that it’s not Addison’s and we won’t find out what’s wrong with me until the autopsy. I’m scared that the test won’t show up even if this is the problem. And I’m scared of dying and I don’t know how I survived the birth of my son all those years ago. (My BP was in the shock range for months. I lost 50 pounds in the 5 days after his birth. The docs had me go to the hospital to get an IV of saline three times a week for two months until my BP stabilized.) I’m scared of letting the steroid shot wear off to take the tests. I don’t know what to do.
So here are my questions: Are my weird symptoms consistant with Addison’s? Would Addison’s even respond to Kenalog?? How long should we wait to allow the Kenalog to wear off before doing the test? Should I get the ACTH or the ITT?