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Medical mystery seeking advice

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1 year 3 months ago #73061 by dmsec
Medical mystery seeking advice was created by dmsec
Hello ITP forum.  I am so happy that this group exists.   I am new here and working on research with my sister.   She has become a medical mystery.  She has a low platelet count, most of her platelets are immature and her blood will not clot.  She has almost died twice in the past 2 years before we realized that she had this issue (whatever it is).  The issue has developed over the past 2-3 years.  When you look at all the many cancer and non-cancerous clotting deficiency diseases, she has some symptoms but not enough of any pattern to have a diagnosis.  She has had loads of tests, including factor tests and bone marrow biopsies, multiple times.  Four different doctors at different medical centers have given up on her, including Moffit in Tampa.  Her arms all full of bruises from simple pressure, and her blood will not clot.  She has been ruled out for MDS.  She ‘may’ have ITP but has only a couple of the symptoms.   I am here asking advice.  When your case is not clear cut, where do you turn?  We are in the Tampa/St Pete area of Florida, and hunting for a Hematologist or any other doctors who will engage
with the puzzle and stick with it.    I even wonder if she had a reaction to the Covid vaccine, but who can help prove anything? We feel caught in the medical machine, but with no answers.  Can anyone offer advice?

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1 year 3 months ago #73063 by CindyL
Replied by CindyL on topic Medical mystery seeking advice
What do your doctors mean when they say only a couple of symptoms of ITP?  ITP generally means low platelets.  I was diagnosed because of bruising.  I had 3 small bruises in the same area where I had gotten shots after a surgery back in 2004 so my doctor sent for blood work.
Can't answer the Covid question.
Hopefully someone else will chime in with more advice.

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1 year 3 months ago #73065 by dmsec
Replied by dmsec on topic Medical mystery seeking advice
Hi, I mean the list of symptoms that you find on internet searches.  She only has the top 2 and none of the others
How does one get a definitive diagnosis of ITP?  None of her doctors said she has this 'disease' if it is considered to be a disease.
And how is it treated if she does?

Bruising
Prolonged bleeding from wounds
Visible red or purple dots
Spontaneous nosebleeds
Bleeding gums, often during dental work
Blood in urine or stools
Unusually heavy menstrual flow
Feeling tired or fatigued

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1 year 3 months ago #73066 by MelA
Replied by MelA on topic Medical mystery seeking advice
What is your sister's platelet count??  Mine were 11k and dropping when diagnosed back in 1989.

One doesn't have to have everything thing you listed to have an ITP diagnosis -  I had the red dots on torso, I had bruises all over, none of the others you mentioned.  Platelet count is what counts.

ITPer does have immature platelets because their platelets are being destroyed in the spleen or other blood cleaning locations in the body. Immature platelets are large. 

Isn't there a Mayo Clinic in Florida?   Isn't Moffitt just for cancer patients? 
      From the Mayo Clinic:
Is ITP considered a bleeding disorder?
Immune thrombocytopenia (ITP) is a disorder that can lead to easy or excessive bruising and bleeding. The bleeding results from unusually low levels of platelets — the cells that help blood clot.Feb 25, 2021



I hope your sister can be diagnosed with whatever it is she has and be on the road to recovery.

"Instead of wasting your time worrying about symptoms, just get it checked out" -Nieca Goldberg, MD

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1 year 3 months ago #73071 by dmsec
Replied by dmsec on topic Medical mystery seeking advice
Hi, and thank you for the reply

Her platelet count can hover close to normal or be lower than normal, but never extremely low
The platelets she has are not mature, are lower by percent than they should be and do not function properly
Moffitt did say she did not have MDS, and her symptoms otherwise do not suggest any obvious blood cancer.
That is why everyone seems to give up on her.  The symptoms do not fall in a neat pattern.

We have studied all of the prescription drugs she is on and none seem to affect platelets.
My question is what would cause platelets to not mature and not function properly?

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1 year 3 months ago #73074 by CindyL
Replied by CindyL on topic Medical mystery seeking advice
Most of us with ITP don't know what caused it.  That's why it was called "idiopathic" when I was first diagnosed.  Now it's called "Immune".
For me personally, it has never bothered me to not know what caused it.
Have you found a hematologist yet?

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1 year 3 months ago #73084 by dmsec
Replied by dmsec on topic Medical mystery seeking advice
Hello, sorry I missed this email this week.  Because she has some symptoms and no doctor (including 4 major medical centers) has said that she has ITP, we don't want to assume that ITP is the answer.  Idiopathic makes it sounds like the doctors know something when they really have no answer.  I had Idiopathic sinusitis for years until one doctor finally figured it out.  I came to this forum hoping that others might have physician recommendations or may have a similar experience and even possibly a direction that we could follow. We are all in the same or similar boat looking for any guidance or clues that others may have figured out.  Thank you all for at least replying.

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1 year 3 months ago #73086 by MelA
Replied by MelA on topic Medical mystery seeking advice
Do you know the number of her platelet counts?  Like mine were 11,000 & dropping when diagnosed - since then they have been all over the place, going in the normal range a few times.   We like to see numbers.

What do you mean by "lower by percent than they should be" ?

"Instead of wasting your time worrying about symptoms, just get it checked out" -Nieca Goldberg, MD

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