How will I know if I need treatment?

When the nurse told me "Your count is 117, we only worry if it drops below 100" it confused me. How would I know if it went lower? I feel sick all the time as it is and I cannot run to her to have my pt count done everytime I find a bruise. I'm pretty clumbsy. The blood blisters in the mouth...never had them or I dont think I have. I bite the inside of my cheeks a lot. What do they look/feel like?

It's not usual to consider treating until the count is under 30 but realistically if you can't tell that your count is low then you probably don't need treating.

If you get petechiae, the little red blood dots, all over your lower legs or somewhere else in high numbers then get a blood test to see. If you have blood blisters in the mouth then that is a definite reason to treat, I get those when my count is under 5. You will know when you've got them. They look like very dark red almost black blisters. I get them on my lips as well as inside my mouth and they look horrible.

Also remember that many people live with low counts and don't come to any harm so there is no need to panic even if your count does go low.

It would be odd for anyone who is familiar with ITP to worry about a count under 100. Usually, the worry point is 10 to 30; that varies by doctor and patient.

Bruises experienced by people with low counts are usually very large and black or dark purple. You can tell that they are not ordinary bruises and they don't go away quickly or fade.

As Ann said, petechiae is also a symptom. You know if you have those too - usually can't miss them.

I agree Sandi, my doctor said we would only treat if mine were under 20 and mine are currently 13 as of last blood test on friday last week, I am on weekly injections of Nplate and currently on 12mg of pred too and am going for a bone marrow biopsy later today.

In my case, the first symptom I had was a bleeding nose. Later on in the day I noticed the petechiae all over my legs, hundreds of small red spots. The following day I had blood blisters inside my mouth. I had lots of them, and you can't miss them. They're almost black, and they're pretty big. I thought I had cut my cheeks by accident, but then they appeared on my tongue as well. That's what sent me to the doctor. By the time they tested me my count was 2.
If it ever happens again, I will go immediately to the doctor as soon as I see the petechiae. That will be my first warning sign.
I'm always banging into things, so I usually have a couple of legitimate bruises on my body. The petechiae are unmistakable, though. My question is, how long do they take to go away? It has been 3 weeks since they appeared and I still have quite a few on my lower legs. I was hoping to wear shorts this weekend because it's going to be pretty hot out.

My nurse writes to me within our online network. I have never actually talked to my hematologist. His nurse sees me and writes to me and this is what she had written.

"Good Morning Gretchen,

I'm sorry you are not feeling any better. This is probably a viral illness since your white blood count is not elevated. The muscle aches and pains often occur with a viral illness.
You don't show evidence of the muscle inflammation illness called Polymyalgia as your ESR test is normal. (this would be unusual in a young woman).
So far the viral tests that have returned show that you have previously been exposed to Parvo Virus, and CMV another virus, and EBV (Epstein Barr virus), but these are previous exposures and not active illness. We are still waiting for the Toxoplasma antibodies to come back.
I did speak to Dr. Yunes about your low platelets. He reviewed your Complete Blood Count and this looks like ITP which stands for Idiopathic Thromocytopenia Purpura. This means that your platelets are slightly low and need to be followed, but there is no needed treatment. They are not low enought to be worrisome, and we do not need to pursue this with any further testing.
Could you take a little time off from work to rest more?"

And that was that.

That sounds fine. They aren't concerned. If you get further symptoms then go back.

You have a good count. Just get on with your life and ignore it.

Well Im not super worried about the ITP part, I'm worried about the fact that I've been having surgery after surgery and dx after dx of different things and it never goes away. I think if I could pin point where this all started I'd be better off but they started at age 6...and then the dxs start rolling in...familial meditterean fever, ADHD, Gallbladder Disease (which they don't get), ovarian cysts, ITP, Aspergers Syndrome (which was a late dx) and dysautonomia.

Hard to ignore it completely. Haven't had any seizure like paralysis episodes in awhile which is great but the fevers, swollen lymph nodes that come and go as they please and not to mention the abdominal pain which can be almost unbearable...I'm finding it hard to find appropriate coping skills for all of these things...

Just a thought:

www.mayoclinic.com/health/porphyria/DS00955/DSECTION=symptoms

Research this.

Wow! Never even heard of that but it sure rings true for most of the symptoms and it would kind of take a lot of my symptoms and group them together instead of a trillion different dxs, ya know? I will send that info to my NP. She likes research.