ITP To Feel or not to feel...that is the question!

Hi, I am new here. I have been lurking lately. Anytime I google a question it always leads me here. So I have been dealing with ITP for a few years without a diagnosis official until this year. The doctors are still not sure why I have it or if it is ITP. I had a bone marrow biopsy which showed a chance of CLL/ALL and Myelodysplastic syndrome. However, I also have NASH (Non alcoholic stetohepatitis) I have been in an out of the hospital this year. I had a severe allergic reaction, swollen, tongue, throat and face to the NPLATE beginning after I took it on October 2 and keeping me over a week. With blood pressure up to 219/113, scary stuff. They think I had a mini stroke. I have had an uncaring oncologist tell me, "You can't FEEL the platelets". Well DUH, but you can certainly feel bad from having low platelets. I was just wondering what symptoms some of you may have? I am currently on a liver study drug for NASH and my hepatologist ran blood work to make sure it is not the cause of the low platelets they keep dropping. Recent test showed them at 36. The oncologist made a not so funny joke saying, "well your platelets got up to 110 after the shot want to make sure it is not the nplate causing the allergic reaction"? I looked at him with a blank stare. I almost died it wasn't funny to me. He is no longer my oncologist. Going to another one. They don't even know for sure. I have had two doctors tell me it my spleen is enlarged up to 20 and my liver is not the cause of my low platlets because the enlarged spleen is from something else. I do have no thyroid and sometimes hypothryoidism. I went to Vanderbilt for NOTHING last week the gastro just confirmed they need to investigate the ITP according to the bone marrow report, I already knew that and was getting that done. Doctors only practice and they have no clue how patients feel do they? Most even try to prescribe you anti depressants as if the pain is in your head. NO..it's in your body. OVER these doctors whom call themselves specialists! My symptoms are nosebleeds, coughing up blood, stomach pain, petachie and petachie rashes by my ankles that some doctors swear it is not from low platlets. (did these people really go to school)? Exhaustion, bone pain. Among many others. So I wondered what symptoms do you not "feel"? Sorry the doctor who told me "you don't feel low platelets" irritated me to no end. I also what to know what horrible things some doctors have said or done to minimize your pain?

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Wow. Hardly know what to say, except I'm sorry all this happened to you, I really am. I've had some great doctors and some really bad doctors throughout my lifetime, and right now I think I have a mediocre doctor for CLL, and a good doctor as my primary and wish it was the other way around. My primary doctor gave me Tramadol for pain, 50 mg. I only take one a day. Other than that I take Tylenol because any other anti inflammatories will make me bleed since I'm on Imbruvica. My platelets are on the low side but not as low as yours. It doesn't do much good to had platelets administered IV because they don't last very long. I had them once when a Pulmonologist had to take fluid out from around my lungs (which was also cancerous), and he wouldn't operate until I had the platelet count up. When I complain to my oncologist about pain, he just ignores it, so.........I guess all I can say is find a caring primary care physician. Mine helps me so much and also listens to my problems and tries to help. She understands what I'm going through as her mother died from cancer not long ago. She's told me she'll do everything she can for me. It helps sometimes just to hear that. Keep looking........you'll find, I hope, a good oncologist and a good primary doctor.

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Sorry to hear you are so unwell. When I relapsed last time, my ITP symptoms were: severe fatigue that started a few weeks before platelets dropped, a bit of petechia particularly on legs (not as much as previously, though), gum bleeding when brushing teeth, a bit of nose bleeding, quite dramatic bruising from not very significant bumps, oh yes and my blood pressure was very high, 180/110 but not necessarily related to ITP (it then got treated independently of my ITP)