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New, confused, scared....please enlighten me

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14 years 8 months ago #11870 by jennaouellette
New, confused, scared....please enlighten me was created by jennaouellette
Hi all! My name is Jenna and I am a newly married, 26 year old female. Recently I saw my PCP to discuss visual changes/ocular migraines I was having. Part of his work up was a CBC, which showed normal RBCs, normal WBCs, and low platelets. The count was 61000. He requested I have the blood work re-done which I did (about 5 days later). This count was 69000. Well of course I turned to 'google' immediately and that's when panic set in, since each site I visited talked about leukemia and other blood cancers. My doctor was very reassuring and said while he did not suspect cancer at all (I'm very healthy otherwise) he was referring me to a hemotologist for suspicion of ITP. I have this appt on THur of this week. I am basically wondering what test you all had done to confirm your diagnosis of ITP. I'm not sure what to expect and am very scared that the hemo will want to do a bone marrow bx. Any advise/thoughts would be greatly appreciated!! This looks like a great community and I look forward to hearing your different experiences!!!
Thanks for your time!:)
  • Sandi
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  • Sandi Forum Moderator Diagnosed in 1998, currently in remission. Diagnosed with Lupus in 2006. Last Count - 344k - 6-9-18
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14 years 8 months ago #11871 by Sandi
Hi Jenna - welcome. I hope I can alleviate your fears.

Your platelet count is very safe right now and should not require treatment. That's good! A safe count is anything over 20,000 to 30,000.

There is no one test to diagnose ITP. It is diagnosed by exclusion, meaning lack of other symptoms (fevers, weight loss, etc) and lack of other low/high blood counts. A bone marrow biopsy is not necessary to diagnose ITP. Some doctors prefer to do them; some do not. You do have the right to refuse.

If your hemo would want to do the BMB and you agree, it's really not that bad. It took 20 minutes in the doctors office and I left with a band aid on my butt. I was sore for a few days, but still able to work and do normal things.

Stop worrying about cancer - I'm sure it's just ITP. Have you been sick lately or on any medications? Either of those can trigger ITP.
  • Sandi
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  • Sandi Forum Moderator Diagnosed in 1998, currently in remission. Diagnosed with Lupus in 2006. Last Count - 344k - 6-9-18
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14 years 8 months ago #11872 by Sandi
Diagnostic tools for adults and children with suspected ITP were grouped into 3 sections of recommendation (supplemental Document Recommendation Box 1; Table 1). A presumptive diagnosis of ITP is made when the history, physical examination, complete blood count, and examination of the peripheral blood smear do not suggest other etiologies for the thrombocytopenia. There is no "gold standard" test that can reliably establish the diagnosis. Response to ITP-specific therapy, for example, intravenous immunoglobulin (IVIg) and intravenous anti-D, is supportive of the diagnosis, but a response does not exclude secondary ITP.

Thrombocytopenia can be caused by myriad conditions including systemic disease, infection, drugs, and primary hematologic disorders. In approximately 60% of pediatric cases, there is a history of a previous infection. An increased risk of ITP is also associated with measles-mumps-rubella vaccination. Bleeding after previous surgery, dentistry, and trauma should be considered when estimating the possible duration of chronic thrombocytopenia or an alternative bleeding disorder. If a diagnosis of ITP is established, contraindications to or cautions about corticosteroid therapy should be noted. Inherited thrombocytopenia should be considered in patients with long-standing thrombocytopenia unaffected by treatment and in those with a family history of thrombocytopenia or bleeding disorders.

Physical examination should be normal aside from bleeding manifestations. Mild splenomegaly may be found in younger patients, but moderate or massive splenomegaly suggests an alternative cause. Constitutional symptoms, such as fever or weight loss, hepatomegaly, or lymphadenopathy might indicate underlying disorder such as HIV, systemic lupus erythematosus (SLE), or a lymphoproliferative disease.

Peripheral blood count

ITP is characterized by isolated thrombocytopenia with an otherwise normal complete blood count. Anemia from blood loss may be present, but it should be proportional to the amount, and the duration, of bleeding and may result in iron deficiency (evidence level IV). If anemia is found, the reticulocyte count may help define whether it the result of poor production or increased destruction of red blood cells (RBCs).

Evaluation of peripheral blood smear

Evaluation of the peripheral blood smear by a qualified hematologist or pathologist is paramount to the diagnosis of ITP. This may demonstrate abnormalities that are not consistent with ITP, such as schistocytes in patients with thrombotic thrombocytopenic purpura–hemolytic uremic syndrome, or leukocyte inclusion bodies in MYH9-related disease. Excessive numbers of giant or small platelets may indicate an inherited thrombocytopenia (supplemental Document 9). Pseudo-thrombocytopenia due to ethylenediaminetetra acetic acid (EDTA)–dependent platelet agglutination should also be excluded (evidence level III).

Bone marrow examination

Bone marrow examination may be informative in patients older than 60 years of age, in those with systemic symptoms or abnormal signs, or in some cases in which splenectomy is considered. Both a bone marrow aspirate and a biopsy should be performed. In addition to the morphologic assessment, flow cytometry and cytogenetic testing should be considered (evidence level IIb-IV). Flow cytometry may be particularly helpful in identifying patients with ITP secondary to chronic lymphocytic leukemia (CLL).

bloodjournal.hematologylibrary.org/cgi/content/full/115/2/168
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14 years 8 months ago #11874 by jennaouellette
Replied by jennaouellette on topic Re: New, confused, scared....please enlighten me
Thank you for your insight Sandi! I really appreciate it!! There is just so much conflicting info out there that it is extremely overwhelming. It is so nice to be able to ask people questions who have gone through it. I think I will be relieved once I finally meet with my hemo and get all the questions and "what if's" off my chest. Thanks again :)
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14 years 8 months ago #11886 by Moonchild_8
Replied by Moonchild_8 on topic Re: New, confused, scared....please enlighten me
I don't know as much as Sandi, that's for sure, but my best advice is to keep positive. I've had ITP since i was in 5th/6th grade [i'm a freshman in college now], and that's one of the few things that's kept me sane. It took me a while, but i finally came to grips with the fact that i can't control it, and do my best to look on the bright side. Hey, at least you're alive [and i think that's something to be happy about :) ] ! :)
I hope all goes well at your hema visit :)

you gotta take the good with the bad, smile with the sad
love what you've got and remember what you had.
always forgive, but never forget
learn from your mistakes but never regret.
people change, things go wrong, but just remember:
life goes on!
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14 years 8 months ago #11927 by shelly.k
Hi Jenna,
My son has had ITP since he was 2 1/2 years old - he just turned 18 a few days ago!! He also has Ulcerative Colitis, and now we think he has started getting ocular migraines. I was just wondering what some of your symptoms were for your ocular migraines. He temporarily loses vision in one eye and at other times sees sparkles, waves, etc. We have seen one opthamologist and are waiting for a second opinion. Our next stop is a neurologist. Getting rather tired of seeing all of these different "ologists". Anyway, best of luck with your appointment. Looking forward to hearing from you!
Shelly
  • Sandi
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14 years 8 months ago #11931 by Sandi
Shelly:

My son has ocular migraines. He does not have ITP. He also slowly loses vision in one eye and sees waves. They last about 20 minutes and go away. He seems to get his more when he is overheated for some reason. He always gets a headache afterward.

We've seen two ophthalmologists and one neurologist. They couldn't find any reason nor could they recommend a treatment. They told us we could see a neuro-opthamologist, but also said they doubted that doctor would have anything to add, so we didn't do it.

He also has snow vision most of the time, but is still able to function well.
  • Sandi
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  • Sandi Forum Moderator Diagnosed in 1998, currently in remission. Diagnosed with Lupus in 2006. Last Count - 344k - 6-9-18
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14 years 8 months ago #11932 by Sandi
Jenna:

Honestly, this site is your best source of information. There is no organization more knowledgeable or up to date than the PDSA.
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14 years 8 months ago #11934 by shelly.k
Sandi,

Thanks for the info! Zach seems to get this when he is tired or stressed. He only experiences the "aura" for a minute or so - seems much longer - but he never gets a headache after. I have done some research, and there are some people that just experience an aura, and nothing else. The thing that worries me is that it started happening a couple weeks after he bumbed his head, needing 7 staples (bump happend over a year ago). His count at the time was in the 90's so they didn't do any kind of scan. I am sure everything is fine, but you just wonder how much more the poor kid has to go through!! :ohmy:

Thanks again,
Shelly
  • Sandi
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14 years 8 months ago #11935 by Sandi
Yeah, I have a daughter who goes through a lot. She has eczema, asthma and Graves Disease. She is a trooper though and just keeps plowing through life. I can take anything for myself, but I hate when it touches my kids.

The Neurologist will probably do an MRI. My son had one...didn't show anything (which is good, I guess).
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14 years 8 months ago #11937 by jennaouellette
Replied by jennaouellette on topic Re: New, confused, scared....please enlighten me
Hi again! to answer your question Shelly, my 'ocular migraines' occured both times after vigorous workouts- so I can relate to the 'overheated'statement. Both times they happened about 20 min after the workout--I would start to get a weak feeling in my eyes, then would start to get a flashing, pulsating sensations...it was like seeing flashes of lightening in my peripheral vision. One time this was followed by an intense headache, the second time no headache was followed Although my first thought was that they were blood pressure related, I went to my eye dr first. She said I was describing an ocular migraine, but could not tell me why it seemed to happen only after exercise. (I have never had problems with migraines or even frequent headaches.) I decided to see my PCP, who sent me for an MRI (got the results today---NEGETIVE!! YAYY!) and the blood work that revealed my low platelets. :(
I now feel like the ocular migraines were my body's way of telling me not to push myself so hard. I have still continued to work out regularly, but not at such a high intensity. I have not had another ocular event since :)
I hope this helps. Seems like your son's experience was similar to mine!! I'm sure he will be fine--try not to stress as these migraines seem to be very common.
Gotta tell you all that I'm loving this site already. Although I hope my low platelets resolve, I am glad to have such a great group of people to talk to!
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14 years 8 months ago #12043 by shelly.k
Thanks Jenna!

Zach has experienced these "auras" around 10 times in the past year. I know they are probably nothing, but I still worry. I guess that's a parent's job :unsure: I'm glad your MRI was fine, and hopefully your platelets will go up soon!!

Shelly