Guest guest Posted February 22, 2006 Report Share Posted February 22, 2006 Both of my SDS boys at one time or another have had enlarged spleens..... they had hepatoslenomegaly-- enlarged spleen and liver. ~Pattie~ " If your actions inspire others to dream more, learn more, do more and become more, you are a leader " ~ Quincy 6th President of the United States Quote Link to comment Share on other sites More sharing options...
Guest guest Posted November 24, 2007 Report Share Posted November 24, 2007 I have splenomegaly -enlarged spleen- nearly every time I flare. During my onset, I too had to disagree with a dr. who wanted to start removing things until my " immune system straightened out " ??? Whatever! They were going to remove my spleen for starters and I said no thanks. Nine years later, I still have my spleen and have learned that it gets bigger and smaller depending on disease activity...it is actually quite effective as a red flag for my doc. If my left upper abdomen is tender and he can feel the spleen is big, we know the dragon is at work even before I get my labs back. Stay Healthy wrote: Tom, Thanks for the response. Yes, anemic for over a year. I also have discomfort in the area - especially after sitting at the computer for a while. CT also shows enlarged spleen, but the nurses say I should not have any unusual sensations from it. That is why I am wondering if the symptoms might be a result of splenomegally. When this started 4 years ago I even had one doctor diagnose it as pancreatic cancer and wanted to remove the pancrease and stomach - I told him to forget it. drwooly2006 wrote: I have an enlarged spleen (splenomegaly) from Stills. It does appear to fluctuate in size. I know when it is getting a little bigger. When that happens I do not get numbness, but a feeling of pressure in the upper left quadrant near the bottom of the rib cage. I feel it mostly after sitting for a period of time (like on a long drive). Especially when I happen to take a deep breath. How are your labs? An enlarged spleen can recycle red blood cells and platelets before they should. The result could be anemia and decreased platelets. Anything like that happen? Tom from PA > > Has anyone had an enlarged spleen, the size of a 2lb. coffee can, as a > result of still's? > --------------------------------- Get easy, one-click access to your favorites. Make Yahoo! your homepage. Quote Link to comment Share on other sites More sharing options...
Guest guest Posted November 24, 2007 Report Share Posted November 24, 2007 I have splenomegaly -enlarged spleen- nearly every time I flare. During my onset, I too had to disagree with a dr. who wanted to start removing things until my " immune system straightened out " ??? Whatever! They were going to remove my spleen for starters and I said no thanks. Nine years later, I still have my spleen and have learned that it gets bigger and smaller depending on disease activity...it is actually quite effective as a red flag for my doc. If my left upper abdomen is tender and he can feel the spleen is big, we know the dragon is at work even before I get my labs back. Stay Healthy wrote: Tom, Thanks for the response. Yes, anemic for over a year. I also have discomfort in the area - especially after sitting at the computer for a while. CT also shows enlarged spleen, but the nurses say I should not have any unusual sensations from it. That is why I am wondering if the symptoms might be a result of splenomegally. When this started 4 years ago I even had one doctor diagnose it as pancreatic cancer and wanted to remove the pancrease and stomach - I told him to forget it. drwooly2006 wrote: I have an enlarged spleen (splenomegaly) from Stills. It does appear to fluctuate in size. I know when it is getting a little bigger. When that happens I do not get numbness, but a feeling of pressure in the upper left quadrant near the bottom of the rib cage. I feel it mostly after sitting for a period of time (like on a long drive). Especially when I happen to take a deep breath. How are your labs? An enlarged spleen can recycle red blood cells and platelets before they should. The result could be anemia and decreased platelets. Anything like that happen? Tom from PA > > Has anyone had an enlarged spleen, the size of a 2lb. coffee can, as a > result of still's? > --------------------------------- Get easy, one-click access to your favorites. Make Yahoo! your homepage. Quote Link to comment Share on other sites More sharing options...
Guest guest Posted November 24, 2007 Report Share Posted November 24, 2007 It's so interesting... I get enlarged lymph nodes in my abdomen... Crazy how they want to take them out and do Biopsies on everything when we know what stills does to us... Anyway, mine usually turns out to be either stills or an infection from stills. I agree that they shouldn't do a surgery unless there is a Tumor that is cancerous. I've had so many scares, I want the organs I have left in me... Instead of taken out of me.. Smart move ! The enlarged spleen must hurt... The enlarged lymph nodes are bad enough... -- Re: Re: Enlarged spleen I have splenomegaly -enlarged spleen- nearly every time I flare. During my onset, I too had to disagree with a dr. who wanted to start removing things until my " immune system straightened out " ??? Whatever! They were going to remove my spleen for starters and I said no thanks. Nine years later, I still have my spleen and have learned that it gets bigger and smaller depending on disease activity...it is actually quite effective as a red flag for my doc. If my left upper abdomen is tender and he can feel the spleen is big, we know the dragon is at work even before I get my labs back. Stay Healthy wrote: Tom, Thanks for the response. Yes, anemic for over a year. I also have discomfort in the area - especially after sitting at the computer for a while. CT also shows enlarged spleen, but the nurses say I should not have any unusual sensations from it. That is why I am wondering if the symptoms might be a result of splenomegally. When this started 4 years ago I even had one doctor diagnose it as pancreatic cancer and wanted to remove the pancrease and stomach - I told him to forget it. drwooly2006 wrote: I have an enlarged spleen (splenomegaly) from Stills. It does appear to fluctuate in size. I know when it is getting a little bigger. When that happens I do not get numbness, but a feeling of pressure in the upper left quadrant near the bottom of the rib cage. I feel it mostly after sitting for a period of time (like on a long drive). Especially when I happen to take a deep breath. How are your labs? An enlarged spleen can recycle red blood cells and platelets before they should. The result could be anemia and decreased platelets. Anything like that happen? Tom from PA > > Has anyone had an enlarged spleen, the size of a 2lb. coffee can, as a > result of still's? > --------------------------------- Get easy, one-click access to your favorites. Make Yahoo! your homepage. Quote Link to comment Share on other sites More sharing options...
Guest guest Posted November 24, 2007 Report Share Posted November 24, 2007 It's so interesting... I get enlarged lymph nodes in my abdomen... Crazy how they want to take them out and do Biopsies on everything when we know what stills does to us... Anyway, mine usually turns out to be either stills or an infection from stills. I agree that they shouldn't do a surgery unless there is a Tumor that is cancerous. I've had so many scares, I want the organs I have left in me... Instead of taken out of me.. Smart move ! The enlarged spleen must hurt... The enlarged lymph nodes are bad enough... -- Re: Re: Enlarged spleen I have splenomegaly -enlarged spleen- nearly every time I flare. During my onset, I too had to disagree with a dr. who wanted to start removing things until my " immune system straightened out " ??? Whatever! They were going to remove my spleen for starters and I said no thanks. Nine years later, I still have my spleen and have learned that it gets bigger and smaller depending on disease activity...it is actually quite effective as a red flag for my doc. If my left upper abdomen is tender and he can feel the spleen is big, we know the dragon is at work even before I get my labs back. Stay Healthy wrote: Tom, Thanks for the response. Yes, anemic for over a year. I also have discomfort in the area - especially after sitting at the computer for a while. CT also shows enlarged spleen, but the nurses say I should not have any unusual sensations from it. That is why I am wondering if the symptoms might be a result of splenomegally. When this started 4 years ago I even had one doctor diagnose it as pancreatic cancer and wanted to remove the pancrease and stomach - I told him to forget it. drwooly2006 wrote: I have an enlarged spleen (splenomegaly) from Stills. It does appear to fluctuate in size. I know when it is getting a little bigger. When that happens I do not get numbness, but a feeling of pressure in the upper left quadrant near the bottom of the rib cage. I feel it mostly after sitting for a period of time (like on a long drive). Especially when I happen to take a deep breath. How are your labs? An enlarged spleen can recycle red blood cells and platelets before they should. The result could be anemia and decreased platelets. Anything like that happen? Tom from PA > > Has anyone had an enlarged spleen, the size of a 2lb. coffee can, as a > result of still's? > --------------------------------- Get easy, one-click access to your favorites. Make Yahoo! your homepage. Quote Link to comment Share on other sites More sharing options...
Guest guest Posted November 24, 2007 Report Share Posted November 24, 2007 It's so interesting... I get enlarged lymph nodes in my abdomen... Crazy how they want to take them out and do Biopsies on everything when we know what stills does to us... Anyway, mine usually turns out to be either stills or an infection from stills. I agree that they shouldn't do a surgery unless there is a Tumor that is cancerous. I've had so many scares, I want the organs I have left in me... Instead of taken out of me.. Smart move ! The enlarged spleen must hurt... The enlarged lymph nodes are bad enough... -- Re: Re: Enlarged spleen I have splenomegaly -enlarged spleen- nearly every time I flare. During my onset, I too had to disagree with a dr. who wanted to start removing things until my " immune system straightened out " ??? Whatever! They were going to remove my spleen for starters and I said no thanks. Nine years later, I still have my spleen and have learned that it gets bigger and smaller depending on disease activity...it is actually quite effective as a red flag for my doc. If my left upper abdomen is tender and he can feel the spleen is big, we know the dragon is at work even before I get my labs back. Stay Healthy wrote: Tom, Thanks for the response. Yes, anemic for over a year. I also have discomfort in the area - especially after sitting at the computer for a while. CT also shows enlarged spleen, but the nurses say I should not have any unusual sensations from it. That is why I am wondering if the symptoms might be a result of splenomegally. When this started 4 years ago I even had one doctor diagnose it as pancreatic cancer and wanted to remove the pancrease and stomach - I told him to forget it. drwooly2006 wrote: I have an enlarged spleen (splenomegaly) from Stills. It does appear to fluctuate in size. I know when it is getting a little bigger. When that happens I do not get numbness, but a feeling of pressure in the upper left quadrant near the bottom of the rib cage. I feel it mostly after sitting for a period of time (like on a long drive). Especially when I happen to take a deep breath. How are your labs? An enlarged spleen can recycle red blood cells and platelets before they should. The result could be anemia and decreased platelets. Anything like that happen? Tom from PA > > Has anyone had an enlarged spleen, the size of a 2lb. coffee can, as a > result of still's? > --------------------------------- Get easy, one-click access to your favorites. Make Yahoo! your homepage. Quote Link to comment Share on other sites More sharing options...
Guest guest Posted November 24, 2007 Report Share Posted November 24, 2007 I wonder....I had to have my tonsils removed about 18 months ago as they always became enlarged every time I was sick (stills) and now my neck still gets tender & swells. I also wound up in the ICU for 5 days afterwards as my blood oxygen levels dropped and I supposedly went nuts on everyone & anyone near me........ They told me I'd never have throat problems again but that hasn't been the case. Sorry if this is not concise or easy to understand...I'm just jotting it down quickly. Kirk > > It's so interesting... I get enlarged lymph nodes in my abdomen... Crazy > how > they want to take them out and do > Biopsies on everything when we know what stills does to us... > > Anyway, mine usually turns out to be either stills or an infection from > stills. I agree that they shouldn't do a surgery unless there is a > Tumor that is cancerous. I've had so many scares, I want the organs I have > left in me... Instead of taken out of me.. > > Smart move ! > > The enlarged spleen must hurt... The enlarged lymph nodes are bad > enough... > > > > > -- Re: Re: Enlarged spleen > > I have splenomegaly -enlarged spleen- nearly every time I flare. During my > onset, I too had to disagree with a dr. who wanted to start removing > things > until my " immune system straightened out " ??? Whatever! They were going to > remove my spleen for starters and I said no thanks. Nine years later, I > still have my spleen and have learned that it gets bigger and smaller > depending on disease activity...it is actually quite effective as a red > flag > for my doc. If my left upper abdomen is tender and he can feel the spleen > is > big, we know the dragon is at work even before I get my labs back. > > Stay Healthy > > <jax4christ@... <jax4christ%40yahoo.com>> wrote: > Tom, > > Thanks for the response. > > Yes, anemic for over a year. I also have discomfort in the area - > especially > after sitting at the computer for a while. CT also shows enlarged spleen, > but the nurses say I should not have any unusual sensations from it. That > is > why I am wondering if the symptoms might be a result of splenomegally. > When > this started 4 years ago I even had one doctor diagnose it as pancreatic > cancer and wanted to remove the pancrease and stomach - I told him to > forget > it. > > > > drwooly2006 <uncle_fuzzy@... <uncle_fuzzy%40verizon.net>> wrote: > I have an enlarged spleen (splenomegaly) from Stills. It does appear > to fluctuate in size. I know when it is getting a little bigger. When > that happens I do not get numbness, but a feeling of pressure in the > upper left quadrant near the bottom of the rib cage. I feel it mostly > after sitting for a period of time (like on a long drive). Especially > when I happen to take a deep breath. > > How are your labs? An enlarged spleen can recycle red blood cells and > platelets before they should. The result could be anemia and decreased > platelets. Anything like that happen? > > Tom from PA > > > > > Has anyone had an enlarged spleen, the size of a 2lb. coffee can, as > a > > result of still's? > > > --------------------------------- > Get easy, one-click access to your favorites. Make Yahoo! your homepage. > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted November 24, 2007 Report Share Posted November 24, 2007 Kirk -- Interesting about your tonsils.. I had mine out when I was a kid... They grew back and I had to have them out two more times. I'm sorry that you are having problems with your tonsils now and are being told that your will always have problems with your neck. I can tell you that whenever I am extremely tired, I get horse, my throat hurts and I get swollen glands in my neck - So yet another stills symptom for you to jot down... -- Re: Re: Enlarged spleen > > I have splenomegaly -enlarged spleen- nearly every time I flare. During my > onset, I too had to disagree with a dr. who wanted to start removing > things > until my " immune system straightened out " ??? Whatever! They were going to > remove my spleen for starters and I said no thanks. Nine years later, I > still have my spleen and have learned that it gets bigger and smaller > depending on disease activity...it is actually quite effective as a red > flag > for my doc. If my left upper abdomen is tender and he can feel the spleen > is > big, we know the dragon is at work even before I get my labs back. > > Stay Healthy > > <jax4christ@... <jax4christ%40yahoo.com>> wrote: > Tom, > > Thanks for the response. > > Yes, anemic for over a year. I also have discomfort in the area - > especially > after sitting at the computer for a while. CT also shows enlarged spleen, > but the nurses say I should not have any unusual sensations from it. That > is > why I am wondering if the symptoms might be a result of splenomegally. > When > this started 4 years ago I even had one doctor diagnose it as pancreatic > cancer and wanted to remove the pancrease and stomach - I told him to > forget > it. > > > > drwooly2006 <uncle_fuzzy@... <uncle_fuzzy%40verizon.net>> wrote: > I have an enlarged spleen (splenomegaly) from Stills. It does appear > to fluctuate in size. I know when it is getting a little bigger. When > that happens I do not get numbness, but a feeling of pressure in the > upper left quadrant near the bottom of the rib cage. I feel it mostly > after sitting for a period of time (like on a long drive). Especially > when I happen to take a deep breath. > > How are your labs? An enlarged spleen can recycle red blood cells and > platelets before they should. The result could be anemia and decreased > platelets. Anything like that happen? > > Tom from PA > > > > > Has anyone had an enlarged spleen, the size of a 2lb. coffee can, as > a > > result of still's? > > > --------------------------------- > Get easy, one-click access to your favorites. Make Yahoo! your homepage. > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted November 24, 2007 Report Share Posted November 24, 2007 Hi & Kirk, I also have a lot of throat problems. Doctor says my tonsils are in bad shape and should come out. I'm not too fond of that idea yet. I have been battling a sore throat for a couple of days this week. If anyone is interested, I know a home remedy that really works for my sore throat. Sorry about your headaches Kirk. Hope you are feeling better tonight. After all, it is gonna hurt when the boys get beat by the packers! :-) , hope you are getting settled in in Tennessee. </HTML> Quote Link to comment Share on other sites More sharing options...
Guest guest Posted November 24, 2007 Report Share Posted November 24, 2007 Hi & Kirk, I also have a lot of throat problems. Doctor says my tonsils are in bad shape and should come out. I'm not too fond of that idea yet. I have been battling a sore throat for a couple of days this week. If anyone is interested, I know a home remedy that really works for my sore throat. Sorry about your headaches Kirk. Hope you are feeling better tonight. After all, it is gonna hurt when the boys get beat by the packers! :-) , hope you are getting settled in in Tennessee. </HTML> Quote Link to comment Share on other sites More sharing options...
Guest guest Posted May 26, 2008 Report Share Posted May 26, 2008 Hi , how big is your spleen measuring from costal edge? Mine used to be about 4cm at my height of autoimmune hemolytic anemia (AIHA) last summer but now has gone up to about 6cm. I see on Dr Terry Hamblin's archives that he says if the spleen is below 6cm it is not necessary to do anything. Does your spleen remain the same size? My questioning has been why is the spleen enlarging in the absence of progressing CLL and what looks like a very very slow hemolysis. But it is trapping platelets just like yours, . Perhaps that is just what it is doing and it is a vicious circle. The bigger it gets the more it traps. The more it traps the bigger it gets. Sounds like some old song i used to know. Be well, Carol Quote Link to comment Share on other sites More sharing options...
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