ITP Diagnosis is in Doubt - Advice Needed!

I know this post is long, but I would be so grateful if any of you could read it and provide some feedback or suggestions! I got diagnosed with ITP in September of 2012. I am a 23 year old female. When I initially went in to the doctor, my platelets were at zero. I had normal counts otherwise, and so they immediately treated me with a very high dosage of predinisone (160 mg). After a few days my platelets went up to ~280. I was fine for a month or so, and then my platelets went back to 0. That time, it took longer for my platelets to come up, and I was on a high dosage of steriods for months, as my doctor was hoping to put me into remission longer. My platelets dropped again after three months of being off steriods. They treated me with ivig, and I was in remission for 6 months. Just a couple of weeks ago I noticed my petechiae coming back to I went to my hematologist to get a CBC.

This time, my ITP was back along with anemia, so my doctor wanted to do further testing. Last week I got a bone marrow biopsy and a full body CT scan. My bone marrow biopsy came back normal, but my CT scan showed ultra-swollen lymph nodes all throughout my body and an enlarged spleen. My doctor told me I had lymphoma after seeing the CT scan results. She ordered a biopsy of my lymph node. We got the results yesterday. My biopsy came back completely normal -- the pathologist and the surgeon thought it looked normal except that it was huge. My doctor still thinks its lymphoma and is sending the tissue samples to another doctor for a second opinion. She wants to do another biopsy of another lymph node in a couple of weeks if that doctor cannot find anything. I had gotten a tiny dose of rituxin to treat my itp a couple of days before the biopsy (had an allergic reaction, so they had to cut it off), and my doctor thinks that might have made the biopsy results inaccurate -- does anyone know if this is the case? Could rituxin mask cancer in a biopsy?

Has anyone else had similar symptoms? Does anyone have any suggestions on where I should go from here? I am considering meeting with an immunologist, but my oncologist said to wait until we get the second opinion on the biopsy. I am just very stressed and worried and ready to know exactly what I am dealing with. I am supposed to get married in three months, and the idea of going through chemo is pretty scary -- there just seem to be so many unknowns with this condition.

Thank you for any support you all can provide!

Hi K. Sorry to hear about your health issues.

Reading the story, I actually think that your doctor is doing the right thing by acquiring a second biopsy. He seems to be trying to be thorough at this point.

An enlarged spleen is usually not a part of ITP and if it is fairly enlarged, the literature suggests that the diagnosis may not be ITP. Adding the swollen lymph nodes makes it even more unlikely.

My thought as I was reading this was that you could look into disorders such as ALPS. Below are a few links that might be helpful. An Immunologist would be helpful for this.

www.niaid.nih.gov/topics/ALPS/understanding/Pages/whatIsAlps.aspx

www.wellness.com/reference/conditions/autoimmune-lymphoproliferative-syndrome/symptoms-and-causes

Hi,

First off, breathe. All of this can really provoke too much anxiety and we forget to take a breath.
I wanted to let you know that you're not alone with these feelings. It is all very scary and frustrating to deal with. I think your doctor is definitely doing the right thing by wanting a second opinion, and I would be upset if they didn't. It is important to have a doctor who is thorough and concerned for you.

Swollen lymph nodes can be caused by any type of viral infections, mono, or other Immune system disorders (i.e. Lupus or Rheumatoid Arthritis) I haven't heard of Rituxan masking anything, but I do know that IVIG's can manipulate different outcomes in blood testing.

I think an Immunologist could be helpful to speak to, especially since you were just diagnosed just 2 yrs ago. I would also feel better knowing my doctor wants to be thorough.