Lymphoma connected with Cold Agglutinin

[rose2425]

Has anyone ever been diagnosed with Cold Agglutinin Disease or Raynaud's? Was it connected to a lymphoma diagnosis?

I may have by accident posted this more than once, I'm sorry if that was the case!

Rose

[Kesia2]

I have Cold Agglutinin and I was diagnosed in July 2010. I am 37 yrs old and still have my period. I am on my period right now and am worried cause of it being so thick. Why did you have your strokes exactly? I don't have lymphoma or raynauds. But I did just have my spleen removed and it seems to be helping my blood count to go up. My spleen was really large so we chose to get it out. This whole illness has been very scary. My name is Kesia

[sultansmom]

I have abnormal cold agglutinin's  and have been seeing an excellent hematologist/ oncologist. He knows so much about it as he is a specialist. I also have low white blood cell count. I am going in for a bone marrow and fluid biopsy next week. As they think I have lymphoma, I am 31, and my health has been going down hill for month. I have cold sweats, itchy skin, SO tired all the time, no matter how much I rest. And body pain that motrin and tylenol do nothing for. Has anymore else had issues with cold agglutinin, and cancer, as my level are getting higher!

[whimzy63]

I have had cold agglutinin disease and raynaud's since I was in my 20's. Although I do see an oncologist due to it's rarity, it has not been associated with lymphoma in my case. Due to the clotting action, I have had multiple strokes, and the raynaud's can be unbearable at times. Stay warm, I wish you much luck in getting a proper diagnosis.

[rose2425]

What is SFN?  

I have been sick for over a year and a half, and I actually had congestive heart failure 8 days post partum in 04-though they said it was not because of the baby.

I have had a fever for 9 months, have lost over 40 pounds, have terrible back pain and lower abdominal pain, night sweats, blah, blah, I do have positive blood tests but then they revert to normal. I don't know if this is gynocological-some sort of blood or lymphoma, or gastrointestinal, I have had two surgeries in the past 7 months to remove large comples masses (benign) one ovarian and the other in my knee-huge the size of a lemon with 5 inch scar.

I also have a severe case of raynaud's and levido reticularis. Apparantly those things don't mean anything, unless there is some sort of definitive blood work. They actually implied I am anorexic. I feel humiliated. Humiliated and guilty, because if I have been somehow doing this to myself, though how could I induce fevers?, I have been causing my family so much pain.  The other side of the coin is that they are missing something and when they do find it it will be way too late. I am desperately searching for the middle ground.

Sorry to vent.

I have been interested in the Cleveland Clinic.  Are you being treated there?

Thanks for listening
Rose

[Dnmh]

Oh honey, I relate! I have had so many needles and tests and probes over the last 7 years, and all they can tell me is I have small fiber neuropatly of unknown origin, maybe auto-immune... ( I had a heart cath before I was 40!)
Don't give up please! It took me that long to get the SFN diagnosis, and I finally have a great primary doc who won't give up either, and that's without insurance and getting funded medical help from the Cleveland Clinic! He is doing everything he can to get any and all tests/treatments covered under the "program" and refers me out when he has no answer.
Keep shopping around for a doctor that will listen to you and act on it. It takes time, but they really are out there!

Please keep me posted on things! I may not always be able to help, but I most likely can relate!

[rose2425]

Thank you, my hematologist did the cold agglutinin  test, but pretty much told me to seek therapy, regardless of the fevers, I have had a good work up and other then my clinical symptoms, there was nothing to indicate disease.  I am back to square one and I give up. Thank you for responding.

Rose

[Dnmh]

Hi Rose. So sorry I don't have an answer for you, but I didn't want your post to get lost. Hopefully someone will post a reply soon!