Leukemia ??

[sherrifortier]

So, I have been getting the run-around for nearly 3 years now.
I am 39 years old. Complete hysterectomy 14 years ago. No estrogen therapy as I have fibrous breast tissue.
My recent blood work platelets 559,000 wbc 13.9 and have a swollen lymph node. I am consistently tired and achy as if I have a chronic flu. Low grade fever that comes and goes and extreme nausea (taking Zofran, Maxeran & gravol for this).
I also have tiny red pin sized spots all over my body. They are not itchy, or raised, but more appear all the time. (They look similar to beauty spots/freckles but are red)
I tested positive for H.Pylori back in Novemeber, but as my alergies prevent any antibiotic treatment, I could only take Tecta & Pepto Bismol for treatment.
I have a gastroscopy consult this month.
Any suggestions as to the cause and treatments or exams to pursue would be greatly appreciated.

[mkh9]

Well since you have a family history and they also didn't have the rash you may have Lupus. I'm supposed to talk to my best friend today who has both systemic and discoid lupus. She is doing great and has had it since she was a teenager and is 60 now. She off all drugs and is in remission. She was on a variety of not steroidal drugs. They were all very harsh. I don't know if mentioned her to you. Best to wait to see what the rheumatologist says. I wish you all the best. If it is lupus I certainly can tell you my friends advice and stories. She mostly now just realizes she has to stay out of the sun. But from what I briefly read there are lots of subtypes of the disease and it affects everyone differently. I would still not take steroids as a pill or injection except maybe for a one time thing . Even then it is very hard on the kidneys.  Do keep in touch.
mkh9

[sherrifortier]

My cousin and great aunt (mother's side) both have Lupus. My sister has spinabifida (also runs on mom's side of family), fibromyalgia on dad's side as well as heart conditions and diabetes.
I don't know much more than that at the moment. No rashes, no butterfly mask (but neither my cousin or great aunt had either, as well my ex's mother didn't with her lupus).
Until the rheumatologist appointment, I'm at another impass.

[mkh9]

Well, you do need more tests to find out. You have a lot of symptoms of Lupus but I think the platelet count is low not high. You have some symptoms of RA and there is Scleroderma but you don't have a rash? So, I'm not sure. Some things with lupus is that the Anti DNA test is positive in only half the people, and the sm protein test is only positive in 30-40% of people but if it is positive then you have Lupus. They can do a skin biopsy or kidney biopsy (ouch). I am sure they give you sedatives. These are more accurate. But with Lupus you usually have a face rash. You don't do you? So, I am stumped except how high is the ANA? I still side on polycythemia at the moment until I hear more lab results. Also, the rheumatologist will go by symptoms too. Does anyone in your family have any autoimmune diseases as they can be genetic? I'm not sure at this point.
mkh9

[sherrifortier]

also forgot to mention the pain in my right shoulder making it dead so u have to use my left hand to move it every morning,m the random red hot ears, and the joint pain in my left big toe and ring finger of right hand. (lol, these may not at all be related, but you never know)

[sherrifortier]

so today's doctor visit resulted in a positive ANA test. She is referring me to a rheumatologist now.
the thumbnail ridges have no color, just finger color. i am stiff and sore everyday. they always blame this on the fibromyalgia. my ibs is the worst its ever been, and i'm way more tired than ever too. so, elevated platelets & wbc & neutrophils & hgb with a positive ana.
i just don't even know anymore

[mkh9]

Did the doctors think it could be polycythemia vera? It is not leukemia. with the high platelet that could be what it is. For this they have to draw you blood to keep the platelet count down so you won't develop blood clots and less stress on the organs. I would ask them about that. The pink spots are petechiae and are like tiny bruises. Are they giving you an anti-coagulant? Did they say which autoimmune disease you could have that would make your platelet count go so high? If they think it is lupus the ANA is not always positive. They should also do an anti-DNA and a biopsy of the skin if they think it is discoid lupus and if systemic your RA and anti-DNA should be positive and your LE-cells. They should look for all these. My best friend has both discoid and systemic lupus. I will look to see if I can find any autoimmune disease that fits such a high platelet count. I'm still thinking it is polycythemia. But i'm not a doctor just a clinical lab scientist.  How are you feeling?  Any worse? It sounds like your joints hurt.  Are the thumbnails with the vertical ridges have any color or are they skin colored?
I'm sorry you are going through all this and I hope you get diagnosed so you can get proper treatment and hopefully feel better.
mkh9

[sherrifortier]

Forgot to mention a few symptoms that may or may not be related:
Tiny pink spots everywhere, random edema in my ankles, both thumbnails have 2 vertical ridges, stiffness in my right hand fingers, back spasms that feel like heartburn making it difficult to breath.

[sherrifortier]

These were my numbers as of August 9, 2013.

Platelets 591
WBC 13.1
Neutrophils 13.6

Bone marrow biopsy negative for leukemia. Tomorrow I get results of ANA, and recent CBC. Hematologist now suspects autoimmune.
I have fibromyalgia as well as IBS, but symptoms of both are much greater than they've ever been lately.
Any suggestion as to the cause?
(F 39yrs complete hysterectomy post third baby.)

[mkh9]

Well, it isn't fun getting those tests but it should be done. It may just be polycythemia. But let me know what happens. I'll keep positive thoughts.
Your  platelets are still high but your WBC count looks only slightly high as if you had a bacterial infection. The neutrophils are borderline high.
take care,
mkh9

[sherrifortier]

One more thing...
Last weeks bloodwork numbers:
490 platelets
13.2 white blood cells
10.0 neutrophils

[sherrifortier]

Bone marrow aspiration and biopsy scheduled for the 29th of August. The new hematologist, whom I adore already, also tested me for the Philadelphia gene as well as for CML. Awaiting the results until biopsy date.

[mkh9]

Just got back from vacation. Sorry to hear about your gall bladder problems. I think the polymorphonuclear leukocytes or PMN's usually go up with infection. And, they can go up with the same problems we talked about earlier. They are a particular type of white blood cell that usually are seen with infection and so forth, but may be going up as things are progressing. I hope the new hematologist gets the ball rolling and gets you into treatment ASAP. Let me know how it goes.
mkh9

[sherrifortier]

Update:
Had an emergency gallbladder removal through laparoscopy on the 9th of June. Was terribly ill, due to a gallstone causing a blocked duct as well as a perforation.
I see the NEW hematologist on the 31st of this month. (For a second opinion) Yay!!!
Also, recent bloodwork shows not only elevated WBC and platelets (both as per the usual) but now elevated polymorphonuclear leukocytes, which is a new finding.
Curious as to whether others have had similar findings, and what their diagnosis / prognosis is.
Thanks

[mkh9]

Hi Sherrifortier,
Hope you are doing ok after we last chatted. I was wanting to make sure that on your lab results you had your units the same as what I was thinking. So for the platelet count you had 559,000  is that X 10 to the 9th ? The reference range is somewhere around 150-450 x10 to the 9th/L? just checking. Also the white count should be 13.9 X10 to the 9/L normal range around 3.8-10.6 x 10 to the 9/L . The ranges are somewhat different from lab to lab depending on the lab equipment used. Did you say your liver enzymes were normal? Do you have any pain in your upper left side near the spleen area or abdominal pain?

Thanks,
mkh9

[mkh9]

Firstly, I'm not a doctor so I can't really diagnose you, but I can advise you like everyone else does on here. Well, I talked to my mother in law and her brother lived in Canada (Edmonton) with his wife, and he had Chronic Lymphocytic leukemia and they tried to put him on the waiting list too. He knew he had gone out of remission by his symptoms and would had died. He paid cash to get his MRI done and he was positive for being out of remission. So he got treated and he lived a long time after that. He didn't go to the ER he just paid for the test and/or the doctor. I don't know if you can afford it but yes I definitely know you need it. I think the platelet count that high you could  have several things but I think they are all treatable if they have the right drugs up there. If they do then I think you will have a normal life span. I think you are probably right in your own diagnosis but I think you may need a bone marrow test to confirm it and the blood tests like the CBC and liver and kidney tests repeated to see where you are now. But you do need treatment and it needs to be taken care of soon. I would take the baby aspirin if you haven't yet because the platelet count is so high that you could get a blood clot or stroke etc. But I know you have the H. pylori . I assume you have an ulcer which probably makes it hard to take aspirin. So, that is another things to consider. If you can I would just try to go in. It can be other things as well. There was a list of things on Wikipedia so it is hard to know until they do more testing. I'm sorry you are going through all this and that they are treating you so poorly when you need the most help.
mkh9

[sherrifortier]

Unfortunately, it is much too costly to go to the US for a second opinion, or any testing. As it stands, my only options are to either sit & wait to see this new Hematologist for a second opinion, or I kick & scream in an Emergency room until I am taken immediately. I'm completely frustrated & fed up with this. My mom just came from a funeral of an RCMP Constable that had similar complaints & symptoms of mine, and all the doctors missed a tumor in his colon.
I know there is something wrong with me, that's obvious. What it is I'm not sure, but I know it's pointing in the Leukemia direction. A definitive answer is what I'm after. So, that treatment can begin before it's too damn late.
If it's not Leukemia, then there is certainly a better diagnosis other than "let's just see what your blood work shows in two weeks". This is completely unacceptable.
I feel like because I'm not an infant, or a senior citizen, that I'm just being brushed off. Eventually, whatever this is, is going to get to the "too late' stage, and I''' still be sitting here waiting for an answer.
Unfair and heartbreaking.

[mkh9]

Yes I saw that on your home page. What if you go back to the same doctor and tell him that the treatment made you a lot worse? Would he listen to you?What about going to the states for a second opinion? Is it too costly? My husbands mother is from Edmonton but has lived here in California since 1952. But his aunt still lives there her husband had chronic lympocytic leukemia and was also Canadian and he thought he had gone out of remission but they wouldn't let him have an MRI. So, he paid cash and they let him have the MRI and he was out of remission so then he got treated. So I don't know how to help here. But you need to see someone soon.
take care,
mkh9

[sherrifortier]

As I live in Canada, paying cash wouldn't help, lol

[mkh9]

Wow, maybe you can go to the ER?  It can't hurt to try? Can you afford to pay cash to see the doctor for just the opinion?
mkh9

[sherrifortier]

Have my gp trying for a second opinion with a new Hematologist, but the wait is somewhere up to 1 year.
Thanks so much for the help, really appreciate it :)

[mkh9]

I can't believe that they didn't say something about your high platelet count. That doctor sounds like a quack. I would try another hematologist. One possibility was iron deficiency but you would be bleeding not just the small about from the H. pylori. You need to take a baby aspirin to stop the platelet from clumping. This is something that needs to be corrected. I believe that it maybe polycythemia or something similar and that you need to be treated as soon as possible.
mkh9

[sherrifortier]

Thank you for your response. I was being seen by a Hematologist, but I haven't heard from him in over a year and since then my symptoms have only become worse. He thought, at the time in May of 2010, that this was iron deficiency related and was giving me iron saturation infusions (6 hours at a time)
However this caused me to have an anaphylactic reaction.
I also have Fibromyalgia which causes me to be chemically sensitive, so yes I am allergic to ALL antibiotics.
Nothing was ever said to me about atypical cells. I have had the bleed time test done and bloodwork but to be honest have no idea what all they've tested for. I know kidney and liver function for sure, because I've also stared retaining water for no reason.
When this all caught doctors attention (in 2010) it started as bloody diarrhea, so that's when they first found the h-pylori and WBC and platelet issues. Since then things have only become worse and getting nowhere with these doctors

[mkh9]

P.s. also they may use this drug in some people if this is what you have.

There are indications that with certain genetic markers, erlotinib may be an additional treatment option for this condition

take care,
mkh9

[mkh9]

Hi, I was looking at this link it is supposed to on polycythemia vera. If it isn't  just look that up. I think your symptoms are very similar to that and it is where you produce too many blood cells including platelets, red cells and white cells. The thing that makes me think it may be this over the other possibilities is that H. pylori is common with the disease, which is strange, and the red spots or petechiae are also. It can make you feel itchy and sometimes arthritis like feeling and tired. The other thing that struck me is it increases the histamine levels and that makes you have allergic symptoms. So that could be it. Either way if you haven't seen a hematologist I would and ask them about it. It is more common in Jewish people but not always. The main treatment is to have your blood drawn often to lower the number of blood cells because you make too much blood. So if this is correct then you would be ok. Also, the baby aspirin will help you not get problems from too many platelets in the mean time. It can be other things. But this seems to fit. Let me know what you think and if you want to know anything else.

http://en.wikipedia.org/wiki/Fusidic_acid.

mkh9