Post by Cubby on Jun 27, 2009 12:25:56 GMT -5
I posted this on Inspire at the request of someone. I decided I should post it over here in case it accidentally gets erased, or something, and in case I ever need it again, it is easier to find over here.
Posted June 24, 2009 at 7:15 pm
I am not considered to be in full remission yet. However: Here is the story minus the first year when I was improperly diagnosed by 10 different specialists.
I have had rapidly progressing diffuse systemic scleroderma since March 2004. I was not properly diagnosed until January 2005. I did not get treatment that worked on me until August, 2005.
By then, the skin on my hands, arms (up to the shoulders) and face was as hard as a rock. My mouth opening was getting smaller and I could not floss.
The skin on my legs, feet and core was swollen and getting harder but nothing like my hands, arms and face.
I was bleeding from the esophagus and stomach. I spent most 2005 in bed.
I could not roll over in bed by myself. Could not get up to go to the bathroom by myself--had to wake up my husband to roll me over or take me to the bathroom. I was in pain 24 hours a day with little relief an entire year. The meds did lessen the pain, but it never was totally gone.
My arms were frozen in a"fixed bent" position, curling inward. My hands were curled and almost closed. I wore gloves 24/7 covered in vasoline as "air" hurt my skin.
But let me go back to March, 2005. I was being treated by one of the top scleroderma specialists/centers in the country. He put me on a chemo drug (Methotrexate--shots). I was also taking 22 pills a day. 12 of them included 7,000 mg of pain pills.
The chemo drug was not working, and I was getting worse. I was given a 3% chance of surviving since my disease progressed so rapidly.
I read about AP (antibiotic protocol) and was told by a different doctor about Photopheresis. I begged my well-known scleroderma specialist for these 2 treatments and he said NO--they do not work. "Give it up or find another doctor."
I did in August, 2005. The new doctor did not believe in AP either, but started me on Photopheresis at the end of August 2005. I was weaned off the chemo drug. I was still getting worse. After 3 months, I had horrible finger ulcers.
Finally, the doctor agreed to start AP (late October, early November 2005). WITHIN A MONTH the finger ulcers were gone and I noticed "minor' lessening of the pain in my body. Within months, the disease stopped progressing.
By August, 2006 it was reversing. My skin was getting soft. My arms were almost open again, but I could not bend them behind me or up over my head. My hands were opening but fingers remained curled slightly. The internal bleeding stopped re-occurring, as it had done 3 previous times after I had procedures to stop the bleeding.
That same month, August 2006, I started water aerobics which I still do 5 days a week. When I first started, my husband had to dress me because I could not move my arms enough to put on a bathing suit.
The first few weeks, I could not move much, just a little. It took about a month before I could move about in the water. By three months, it seemed that the water aerobics trippled my improvement along with the treatments, and I was moving rather freely in the water.
It took about another 6--8 months but my arms straightened out and my skin was softening. More time and all my skin was soft, except for my forearms which remained hard (Until Fall of 2008). My mouth opening went back to normal earlier, but never got wide enough to floss until about the Fall of 2008.
The only residual I have is my fingers are bent at the middle knuckles so I cannot straighten them completely. From the middle knuckle to the tips, my fingers are still slightly hard, but not deformed as some hands get. That's why I continue my treatments. My ANA is 0 an all my bloodwork is normal.
On "paper" I am in remission but my doc won't say remission until my fingers are normal and it does appear that it might happen.
I have no more internal bleeding but take Zegarid for the reflux which I might always have to take.
I am down to 3 pills a day and one of them is an iron pill--so two prescriptions.
So, for those who do not believe my treaments work, they need to meet my doctor, my dentist, my friends, my family, my grocery store clerks, my dry cleaner, housekeeper, gardener, pharmacist, manicurist and some members of this and other boards whom I have met in person.
If you would like any other information, please contact me at cubbymikey@aol.com.
PS: What I did not include is that we were living in the Annapolis, Md area, when I had my first symptoms in March, 2004. We had moved there in 2001 to be near family after living in California for 22 years. As I continued to be MISDIAGNOSED, I was getting worse. I researched Scleroderma and took it to 1 doctor and he said YOU DON'T HAVE THAT.
I told my husband I was afraid I was dying and that I was the only person who knew it. (Turned out, I was right). I got him to agree to sell our house, buy another one in California, and get transferrred back. We left Annapolis late December, 2004 and arrived back in California January 27, 2005.
My first doctor appointment was January 30 or 31 and he knew what I had immediately!!!
Posted June 24, 2009 at 7:15 pm
I am not considered to be in full remission yet. However: Here is the story minus the first year when I was improperly diagnosed by 10 different specialists.
I have had rapidly progressing diffuse systemic scleroderma since March 2004. I was not properly diagnosed until January 2005. I did not get treatment that worked on me until August, 2005.
By then, the skin on my hands, arms (up to the shoulders) and face was as hard as a rock. My mouth opening was getting smaller and I could not floss.
The skin on my legs, feet and core was swollen and getting harder but nothing like my hands, arms and face.
I was bleeding from the esophagus and stomach. I spent most 2005 in bed.
I could not roll over in bed by myself. Could not get up to go to the bathroom by myself--had to wake up my husband to roll me over or take me to the bathroom. I was in pain 24 hours a day with little relief an entire year. The meds did lessen the pain, but it never was totally gone.
My arms were frozen in a"fixed bent" position, curling inward. My hands were curled and almost closed. I wore gloves 24/7 covered in vasoline as "air" hurt my skin.
But let me go back to March, 2005. I was being treated by one of the top scleroderma specialists/centers in the country. He put me on a chemo drug (Methotrexate--shots). I was also taking 22 pills a day. 12 of them included 7,000 mg of pain pills.
The chemo drug was not working, and I was getting worse. I was given a 3% chance of surviving since my disease progressed so rapidly.
I read about AP (antibiotic protocol) and was told by a different doctor about Photopheresis. I begged my well-known scleroderma specialist for these 2 treatments and he said NO--they do not work. "Give it up or find another doctor."
I did in August, 2005. The new doctor did not believe in AP either, but started me on Photopheresis at the end of August 2005. I was weaned off the chemo drug. I was still getting worse. After 3 months, I had horrible finger ulcers.
Finally, the doctor agreed to start AP (late October, early November 2005). WITHIN A MONTH the finger ulcers were gone and I noticed "minor' lessening of the pain in my body. Within months, the disease stopped progressing.
By August, 2006 it was reversing. My skin was getting soft. My arms were almost open again, but I could not bend them behind me or up over my head. My hands were opening but fingers remained curled slightly. The internal bleeding stopped re-occurring, as it had done 3 previous times after I had procedures to stop the bleeding.
That same month, August 2006, I started water aerobics which I still do 5 days a week. When I first started, my husband had to dress me because I could not move my arms enough to put on a bathing suit.
The first few weeks, I could not move much, just a little. It took about a month before I could move about in the water. By three months, it seemed that the water aerobics trippled my improvement along with the treatments, and I was moving rather freely in the water.
It took about another 6--8 months but my arms straightened out and my skin was softening. More time and all my skin was soft, except for my forearms which remained hard (Until Fall of 2008). My mouth opening went back to normal earlier, but never got wide enough to floss until about the Fall of 2008.
The only residual I have is my fingers are bent at the middle knuckles so I cannot straighten them completely. From the middle knuckle to the tips, my fingers are still slightly hard, but not deformed as some hands get. That's why I continue my treatments. My ANA is 0 an all my bloodwork is normal.
On "paper" I am in remission but my doc won't say remission until my fingers are normal and it does appear that it might happen.
I have no more internal bleeding but take Zegarid for the reflux which I might always have to take.
I am down to 3 pills a day and one of them is an iron pill--so two prescriptions.
So, for those who do not believe my treaments work, they need to meet my doctor, my dentist, my friends, my family, my grocery store clerks, my dry cleaner, housekeeper, gardener, pharmacist, manicurist and some members of this and other boards whom I have met in person.
If you would like any other information, please contact me at cubbymikey@aol.com.
PS: What I did not include is that we were living in the Annapolis, Md area, when I had my first symptoms in March, 2004. We had moved there in 2001 to be near family after living in California for 22 years. As I continued to be MISDIAGNOSED, I was getting worse. I researched Scleroderma and took it to 1 doctor and he said YOU DON'T HAVE THAT.
I told my husband I was afraid I was dying and that I was the only person who knew it. (Turned out, I was right). I got him to agree to sell our house, buy another one in California, and get transferrred back. We left Annapolis late December, 2004 and arrived back in California January 27, 2005.
My first doctor appointment was January 30 or 31 and he knew what I had immediately!!!