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Autoimmune questions
This is regarding my partner. He has some type of autoimmune disorder that I think is the cause of his skin issues.
He has a hx of Ehler's Danlos and Ulcerative Colitis, both of which are in remission. The UC was very severe at one time, he was on high dose steroids for years otherwise he would have rectal bleeding. The side effects he suffered include cataracts and dental problems. He has been off Pred for years now. But this skin issue has been baffling. At least 7 dermatologists have been stumped, tried numerous scripts w/o any benefit. The only topical that helps is Clobetasol, maybe oral antihistamines. He has patches of dry skin with intense pruritis, some hives but not always. Some times the skin will appear slightly dusky where it itches. He also occasionally gets these crater-like lesions in clusters mostly on his feet- not vesicular. They take forever to heal. The skin issue started after he laid sod down in his yard- within minutes broke out over his entire body, tiny red dots w white centers. This went on for 2 yrs. I really think this is an autoimmune problem and have suggested an appt. with an Allergist/Immunologist. Any other ideas?
He has a hx of Ehler's Danlos and Ulcerative Colitis, both of which are in remission. The UC was very severe at one time, he was on high dose steroids for years otherwise he would have rectal bleeding. The side effects he suffered include cataracts and dental problems. He has been off Pred for years now. But this skin issue has been baffling. At least 7 dermatologists have been stumped, tried numerous scripts w/o any benefit. The only topical that helps is Clobetasol, maybe oral antihistamines. He has patches of dry skin with intense pruritis, some hives but not always. Some times the skin will appear slightly dusky where it itches. He also occasionally gets these crater-like lesions in clusters mostly on his feet- not vesicular. They take forever to heal. The skin issue started after he laid sod down in his yard- within minutes broke out over his entire body, tiny red dots w white centers. This went on for 2 yrs. I really think this is an autoimmune problem and have suggested an appt. with an Allergist/Immunologist. Any other ideas?
On Dec. 4,2009 I wad admitted through the E.R to the hospital. The reason I was told I was being admitted was that my blood test results indicated sever gallbladder & pancreas disease. I was admitted on the surgical floor.
They ran test after test along with 3 sets of abdominal x-rays, 3 MRI's, and 2 ultrasounds. FINDINGS: No gallstones, no enlargement of bile ducts. There was a 2.6 cm right ovarian cyst with multiple follicles on BOTH ovaries.Several air pockets found in abdominal area. Inflammation of the colon was apparent. Gas pockets were also noted in large.
After all this, the General surgeon at the hospital finally came to talk with me and give me the results of testing.I was told I needed an emergency Colostomy surgery, a major operation, and will require a hospital stay of at least several days and six weeks or more of recovery at home. The operation was the same day, 2 hours later.This is where my hellish nightmare begin and STILL as of 3/11/2011 I have been in a FIGHT for my life.
In March, I still had same symptoms WITH ADDED abdominal pain and swelling in lower abdomen. Once again I was sitting with my PCP trying to solve the riddle. I was sent for another CT scan and an Ultrasound that same day. Both were ordered on abdomen and lower pelvis.
Here were the findings: The left ovarian cyst that the Dr. left alone (but visually noted and documented) was then at 9 cm. I was in total shock! That was the very first I had heard about a cyst I had let alone seeing that it more than tripled in such short time, a little over 3 months. I was immediately sent to BNH-Center For Women & Cancer.
The new Dr ordered 2 last test, an MRI on the cyst, and a C-125 blood test. That's when we discovered it wasn't a cyst at all, but rather a Large Abdominal Mass/Tumor that was 12.9 cm. I was told I had to have it removed ASAP and sent for biopsy. The surgery was scheduled for the next Monday. Almost a year ago from today.The tumor was removed and I started the recovery process all over again hoping and praying there was an end in sight.
Four months come and went. Some of the issues had been resolved, but I was having new additional pain with very alarming stomach problems. I truly felt as if I was getting sicker by the day. Every time I go to Dr. they seem to find something else wrong.
My PCP and I again began a new quest to find out what was going on! By now I'm starting to lose my nerve and patience. I wonder if maybe it's in my head or if I'm ever going to get better.
I was sent for another CT scan to look for abnormal growths (by then I am sure that the tumor is back) and thinking that it's cancer.
Thankfully the CT SCAN did not find any new growths in stomach. Rather it showed I had a 2cm nodule. A solitary pulmonary nodule which is a single abnormality in the lung that is smaller than 3 cm in diameter. Generally, a pulmonary nodule must grow to at least 1 cm in diameter before it can be seen on a chest x-ray film. The other finding was that I had a abdominal incisional hernia.
Once again i was sitting in the office of a General Surgeon discussing going under the knife again! This time for an abdominal incisional hernia. The 3rd time in 7 months! this surgery took place on 7/11/2010
My whole stomach was double line with Mess Netting. The Dr. told me that every place I had an internal stitch placed had herniated for a total of 4 different places. And still she did not think that this could explain my symptoms or all the upper right quadrant pain.
Recovery for me is still underway physically. The pain still exists.
On Sat. 03/05/2011 I had another very painful experience that knocked me on my *** again! I refused to go to E.R knowing that all they could was offer me drugs and maybe shake my hand good-bye. I have almost given up any and all hope of finding answers and explanations as to what is slowly sapping the life out of me.
Mon. 03/07/2011 I went to PCP with the pain once again. It was all I could do to walk to exam room. I went over symptoms with the Dr. and told him I thought perhaps I had another Ovarian cyst rupture. He ordered another STAT CT scan with contrast IV and told me to go straight to hospital and to NOT LEAVE until he called me and instructed me as to what to do.
Impression of CT ABDOMEN AND PELVIS WITH CONTRAST
Right ovarian follicules with 3 cysts.
There is persistent diastasis of the rectus abdominus muscles and persistent incisional hernia to incision cite.
Dilatation of the common bile duct (with no etiology observed) measuring up to 16 mm
ALL OTHER ORGANS ARE NORMAL AND SHOW NO SIGNIFICANT ABNORMALITIES.
I have made the choice to fight back and hopefully, by the grace of God, find some much needed answers. Any Idea please? Guidance would be great also. AnnaMaria
***ALL SYMPTOMS HAVE PERSISTED SINCE DEC. 2009 TO CURRENT 3/11/2011
Testing & Results (since Dec. 4,2009)
blood work
CA-125 = 11.5
Amylase = 67
Lipase = 292
Urine = Specific gravity of more than 1,030 with a ph of 6
Sodium = 134
Potassium = 4.2
Chloride = 99
BiCarb of 30
Glucose = 90
BUN of 5
Creatinine of 0.8
ALK Phos = 160
CBC = Hemoglobin of 13.8 / Hematocrit of 40.1
WBC = 8,500
Platelet Count = 284,000
Differenctial : Segs - 73 Lymphs - 24 Monos - 4 ( I have no clue what this means)
24 hr. Urine catch
ORGANISM # 1 ENTEROBACTER CLOACAE (W22)
Piperacillin/Tazobactam 16 S
Cefazolin >=64 R
Cefoxitin >=64 R
Ceftazidime <=1 S
Ceftriaxone <=1 S
Cefeppine < = 1 S
Ertapenen <=0.5 S
Imipenem<=1 S
Amikacin <=2 S
Grntamicin <=1 S
Tobramycin <=1 S
Ciprofloxacin <=0.25 S
Levofloxacin 0.5 S
Nitrofurantoin 128 R
Trimethoprim/Sulfamethox <=20 S
*S* SUSCEPTIBLE *I* INTERMEDIATE *R* RESISTANT
They ran test after test along with 3 sets of abdominal x-rays, 3 MRI's, and 2 ultrasounds. FINDINGS: No gallstones, no enlargement of bile ducts. There was a 2.6 cm right ovarian cyst with multiple follicles on BOTH ovaries.Several air pockets found in abdominal area. Inflammation of the colon was apparent. Gas pockets were also noted in large.
After all this, the General surgeon at the hospital finally came to talk with me and give me the results of testing.I was told I needed an emergency Colostomy surgery, a major operation, and will require a hospital stay of at least several days and six weeks or more of recovery at home. The operation was the same day, 2 hours later.This is where my hellish nightmare begin and STILL as of 3/11/2011 I have been in a FIGHT for my life.
In March, I still had same symptoms WITH ADDED abdominal pain and swelling in lower abdomen. Once again I was sitting with my PCP trying to solve the riddle. I was sent for another CT scan and an Ultrasound that same day. Both were ordered on abdomen and lower pelvis.
Here were the findings: The left ovarian cyst that the Dr. left alone (but visually noted and documented) was then at 9 cm. I was in total shock! That was the very first I had heard about a cyst I had let alone seeing that it more than tripled in such short time, a little over 3 months. I was immediately sent to BNH-Center For Women & Cancer.
The new Dr ordered 2 last test, an MRI on the cyst, and a C-125 blood test. That's when we discovered it wasn't a cyst at all, but rather a Large Abdominal Mass/Tumor that was 12.9 cm. I was told I had to have it removed ASAP and sent for biopsy. The surgery was scheduled for the next Monday. Almost a year ago from today.The tumor was removed and I started the recovery process all over again hoping and praying there was an end in sight.
Four months come and went. Some of the issues had been resolved, but I was having new additional pain with very alarming stomach problems. I truly felt as if I was getting sicker by the day. Every time I go to Dr. they seem to find something else wrong.
My PCP and I again began a new quest to find out what was going on! By now I'm starting to lose my nerve and patience. I wonder if maybe it's in my head or if I'm ever going to get better.
I was sent for another CT scan to look for abnormal growths (by then I am sure that the tumor is back) and thinking that it's cancer.
Thankfully the CT SCAN did not find any new growths in stomach. Rather it showed I had a 2cm nodule. A solitary pulmonary nodule which is a single abnormality in the lung that is smaller than 3 cm in diameter. Generally, a pulmonary nodule must grow to at least 1 cm in diameter before it can be seen on a chest x-ray film. The other finding was that I had a abdominal incisional hernia.
Once again i was sitting in the office of a General Surgeon discussing going under the knife again! This time for an abdominal incisional hernia. The 3rd time in 7 months! this surgery took place on 7/11/2010
My whole stomach was double line with Mess Netting. The Dr. told me that every place I had an internal stitch placed had herniated for a total of 4 different places. And still she did not think that this could explain my symptoms or all the upper right quadrant pain.
Recovery for me is still underway physically. The pain still exists.
On Sat. 03/05/2011 I had another very painful experience that knocked me on my *** again! I refused to go to E.R knowing that all they could was offer me drugs and maybe shake my hand good-bye. I have almost given up any and all hope of finding answers and explanations as to what is slowly sapping the life out of me.
Mon. 03/07/2011 I went to PCP with the pain once again. It was all I could do to walk to exam room. I went over symptoms with the Dr. and told him I thought perhaps I had another Ovarian cyst rupture. He ordered another STAT CT scan with contrast IV and told me to go straight to hospital and to NOT LEAVE until he called me and instructed me as to what to do.
Impression of CT ABDOMEN AND PELVIS WITH CONTRAST
Right ovarian follicules with 3 cysts.
There is persistent diastasis of the rectus abdominus muscles and persistent incisional hernia to incision cite.
Dilatation of the common bile duct (with no etiology observed) measuring up to 16 mm
ALL OTHER ORGANS ARE NORMAL AND SHOW NO SIGNIFICANT ABNORMALITIES.
I have made the choice to fight back and hopefully, by the grace of God, find some much needed answers. Any Idea please? Guidance would be great also. AnnaMaria
***ALL SYMPTOMS HAVE PERSISTED SINCE DEC. 2009 TO CURRENT 3/11/2011
Testing & Results (since Dec. 4,2009)
blood work
CA-125 = 11.5
Amylase = 67
Lipase = 292
Urine = Specific gravity of more than 1,030 with a ph of 6
Sodium = 134
Potassium = 4.2
Chloride = 99
BiCarb of 30
Glucose = 90
BUN of 5
Creatinine of 0.8
ALK Phos = 160
CBC = Hemoglobin of 13.8 / Hematocrit of 40.1
WBC = 8,500
Platelet Count = 284,000
Differenctial : Segs - 73 Lymphs - 24 Monos - 4 ( I have no clue what this means)
24 hr. Urine catch
ORGANISM # 1 ENTEROBACTER CLOACAE (W22)
Piperacillin/Tazobactam 16 S
Cefazolin >=64 R
Cefoxitin >=64 R
Ceftazidime <=1 S
Ceftriaxone <=1 S
Cefeppine < = 1 S
Ertapenen <=0.5 S
Imipenem<=1 S
Amikacin <=2 S
Grntamicin <=1 S
Tobramycin <=1 S
Ciprofloxacin <=0.25 S
Levofloxacin 0.5 S
Nitrofurantoin 128 R
Trimethoprim/Sulfamethox <=20 S
*S* SUSCEPTIBLE *I* INTERMEDIATE *R* RESISTANT
MEDICAL PROFESSIONAL
This still sounds like a subcutaneous infection to me, one that also stimulates an autoimmune reaction. He probably needs to see a dermatologist with extensive infectious disease experience to determine the orgin.
MEDICAL PROFESSIONAL
The soil-contact origin and sign/symptoms of the skin disorder(s) point to a possible infectious nature. In fact, I have heard similar descriptions before. I would like to ask: does he have sunburn-like skin sensations? This is commonly found in skin infections, such as Mycoplasma species. This class of infection is commonly found in UC.
Prof. Garth Nicolson
Prof. Garth Nicolson
A related discussion, UCTD please help was started.
A related discussion, could I still have RA? was started.
About the sunburn like sensation with this rash- he doesn't complain of burning but the itching is so intense, he has bruised himself and broken the skin. This has really caused considerable suffering. We have a humidifer since we live in CO, he tries to keep his fingernails short, doesn't take hot showers, we even installed a showerhead filter to remove chlorine. Nothing seems to help.
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