My Diagnosis

I’ve decided, for several reasons, to start a blog about my experience with Essential Thrombocythemia, or ET.  First of all, it will help me as I try to sort things out.  Being a new diagnosis for me, I am still floundering in all the new information and emotions that I am dealing with.  This blog will also serve, hopefully, to help anyone else who is dealing with this disease.  Comfort in numbers, so to speak…knowing you are ‘not the only one out there’ and all that.  It will also be a way to update my friends and family that are asking me for updates, and help them to learn along with me.

This first post is a summary of the events leading up to the actual diagnosis.  It is written in retrospect.

Back during late summer I noticed a blurry spot in my vision.  Picture a window representing your field of vision.  At roughly the 5 o’clock position in this window, about a quarter of the way up from the bottom, there is a blurry area.  If you hold your hands out at full arms’ length, and make an oblong circle with your hands with the fingertips barely touching, this is about the size of it.  When I say ‘blurry’, what I mean is that if you were to dip your fingers in Vaseline and smear them on the ‘window’ in that spot it is the same effect.  Whatever I look at, in that area, appears ‘smeared’.  I notice it more when I am looking at something with a pattern to it.  For example, grass or carpeting.  When I am looking at several objects this ‘smear’ is not as noticeable.  I went to my doctor when this vision problem had remained for about a month.  Yes, I know that is a long time to not act on something like that…at first I expected it to go away, as do other vision problems that I sometimes have, but it didn’t.  So off to the doctor I went.

I have a history of level 3 Hypertension.  When I was 22 I was put on blood pressure medication.  During the summer of 2007, my BP got so high that my vision became nothing but rings of flashing lights.  I spent 2 days in the cardiac unit of the emergency room, undergoing stress tests, CT scans, EEG’s and several other tests to make sure that I had not had a stroke.  Then my medications were changed, I changed my doctor (to the one I saw in the ER), and for the first time in my adult life my BP is normal.  But, when I developed this new vision problem my doctor was worried again that I may have had a stroke.

My doctor did a series of blood tests first.  He checked for Lupus, MS, and some standard blood work.  He also scheduled me to see an Opthamologist on September 29th and to have tests done at the hospital on October 2nd.  I was to return to my primary care doctor on October 1st.

My first visit to the Opthamologist didn’t turn up anything out of the norm.  So he scheduled me to come back in a couple of weeks for more extensive testing, like Field of Vision tests.  I don’t recall the date of the second appointment, and it appears I didn’t write it on my calendar, but I seem to recall it was about 2 weeks.  My blood work showed nothing really abnormal, except the Lupus test showed something positive so my primary care doctor drew blood for the next level of Lupus test.  He also briefly mentioned that my platelet count was very high.  He drew more blood for basic blood tests as well, and I was to return to him on the 15th of October.

On October 2nd I had my first round of tests at the hospital.  I had an Ultrasound of my Carotid artery, an MRI of my eyes and brain, an Echocardiogram, and they ended up having to do an x-ray of my head when they found out that I have worked extensively with metals: cutting, grinding and welding.  They were worried that if I had too much metal dust in my system and they did the MRI it could cause a problem.  Standard precaution, I guess.  They didn’t find any results that told them the cause of the vision problems, but lucky me…they did find some other problems.  They found a cyst in one of my sinus cavities, growths on my Thyroid, and the Ultrasound showed a 60% blockage in my Carotid artery.  The thing about the Ultrasound, though, is that it didn’t show an actual blockage…the result came from measuring the velocity of the blood through the artery.

My next visit to the Opthamologist didn’t give us any answers, either.  The tests that they did came back normal.  However, he did point out that because the vision abnormality was the same in both eyes he believed that the problem wasn’t in my eyes, it was in my head.  And no, contrary to the resulting jokes, he didn’t mean it was my imagination.

On my October 15th visit to my primary care doctor, he told me that the new Lupus test had come back negative.  Once again my blood work was normal, but he again mentioned my elevated platelet count which was now even higher.  Because of this, he told me to start taking 81mg aspirin daily.  He decided to do a new round of tests at the hospital in response to the results of the first round.  I had an Ultrasound of my Thyroid, a Thyroid Uptake Scan (which was a 2-day test), an MRA (which I learned was like an MRI but only showed the blood vessels) of my brain –he was still concerned about a stroke–, a more extensive Ultrasound of my Carotid and an Ultrasound of my abdomen.

So on November 11th I was back at the hospital for those tests.  A few days later (again, it is not on my calendar for some reason and I don’t remember the exact date) I was back at my primary care doctor’s office reviewing the results.  Once again, no Carotid blockage, the tests showed that I have non-cancerous growths on my Thyroid, and there had been no aneurisms in the blood vessels in my head.  But once again, platelet count was higher.  He finally said to me, “Julie, I am stumped.  The only thing I can think of is this platelet count.  I want you to go see a Hematologist.”

I just want to add here…I have no problem with a doctor telling me that he is stumped and referring me to someone else.  I don’t see that as a sign of inadequacy, I see that as a sign of a good doctor who knows his limits and has the best interest of the patient in mind as opposed to the best interest of his ego.  I don’t expect a single doctor to know everything.

I went to see the Hematologist on November 24th.  At that time my platelet count was 814,000.  Normal is around 250,000.  Right away, the Dr. told me that he suspected Essential Thrombocythemia.  He drew 9 vials of blood for various tests, including the JAK-2 test.  I was scheduled to return to him on December 16th.

On December 16th, I learned that the JAK-2 test came back positive.  I was officially diagnosed with Essential Thrombocythemia.  My platelet count was also now at 863,000.  ET is a rare disease – only about 1.5 people in 100,000 have it.  It puts me at high risk for problems caused by blood clotting, such as strokes and heart attacks.  It also puts me at high risk for hemorrhaging.  My next post will give more details about the disease itself.

Usually, patients are categorized as either low-risk or high-risk.  If you are under 60 years old and your count is below 1,000,000, you are low-risk.  If you are either over 60 or your count is above a million, you are high-risk.  My Hematologist has categorized me as intermediate-risk.  He did so for two reasons: my count is still rising and looks as though it will quickly pass the million mark, and also because I am symptomatic.  Only one-third of ET patients show other symptoms.  Usually, there is no clue of a problem except for elevated platelet counts discovered during routine blood tests.  In addition to the vision problem, I also suffer from heavy fatigue, muscle aches, dizziness, extreme itching over my entire body after showering and more itching than normal at other times, my hands always fall asleep on me, especially at night, my hands and feet are always cold, and often I have excruciating, burning pain in the soles of my feet when I first get out of bed in the morning.  I have learned that these are all caused by the ET.

So this is where I stand now.  I return to my Hematologist on January 14th.  At that time we will see if my count is still rising and we will also decide whether I will start oral chemotherapy and have a bone marrow biopsy.  In the meantime, I am doing as much research online as I can and learning everything I can about this disease.  I have joined a wonderful online forum about ET, and have been in contact with a local support group and will be attending their next meeting in February.

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~ by julie70 on January 5, 2009.

11 Responses to “My Diagnosis”

  1. Hey, Julie, this was so informative. What a great way for you to deal with this! I hope that you can help others, but mostly I hope it helps you. This is exactly the way I would deal with it myself and if there is anything I can do, you just let me know. Thanks for sharing with all of us. Hugs to you!

  2. Well done! Keep this up as it will be helpful to others too. Can you give some info about the local support group that meets in Feb? It would be good if my husband would go. I’m gonna RSS your blog. Thanks again. See you on FB.

    • Hi Pat!
      I added a new post with some helpful links, including the link for the MPD Support Group Directory. There is a group listed for Mid-Michigan.
      I also messaged you about it on FB 🙂

      Julie

  3. We are so proud of you for the way you are dealing with this.. probably better than your Dad and I am. We are confident that you will get this under control and hopefully you can help others too. We know you are a strong person and when you make your mind up to accomplish something, we know you put 101% into it. Work at this the best you can for others dealing with this problem, but most of all for your daughters, husband, and parents, who love you very, very much. You are an incredible and very talented woman……. We love you very much.. Mom and Dad

  4. These diseases are lonely to suffer with, and there is a lot of medical misconception, even by physicians. We have rare diseases. It is why I founded http://www.mpdsupport.org and a daily email digest in 1994. It is surprising how much education and information a long time patient even like myself suffering PV since 1990, just how much one can learn by reading of others experiences. Your blog is great. Good wishes with it. Contribute to helping many others with MPD, post to MPDSUPPORT.ORG and share with close to 3,000, not a handful of others. I’ll link your blog on our list. The fear and concerns of newly diagnosed MPD patients is at times palpable. Help as many others as you can.

  5. Hi – I just got diagnosed with ET and it is so nice to read about your experience. Thank you for sharing all this detailed information!

    • Hi Ellen 🙂
      Thanks for reading! As you can see, I update in spurts. I’m trying to get better about that…I have a few things to write about now, so I should have a few posts coming up within the next week.

  6. Join us, 3,000 strong, since 1994, myeloproliferative diseases

    • Hi Robert,

      I’ve been to mpdsupport.org…it is a wonderful, informative site. I also have the link to it on my ‘Helpful Links’ post from January, 2009, to help spread the word about your great site :).

      Thanks for stopping by!

      Julie

  7. Thank you for this post! It’s wonderful to know I’m not the only one out there with ET.
    I’m a 54 year old lady from Australia. My story started about 6 years ago when I experienced crushing chest pains running down my arms, up my neck and into my jaw. In the emergency room I was hooked up and thoroughly tested. The doctor could not find anything wrong and suggested I had an anxiety attack. So I have been suffering these chest pains for several years thinking I was having anxiety attacks.
    The next symptom was extremely painful feet. Couldn’t walk and would cry and gasp with the pain. I would search the net looking for answers but nothing would seem to pinpoint anything. My doctor suggested I see a podiatrist who sold me expensive insoles for my shoes (which certainly didn’t help). My only relief was to take painkillers. My doctor told me not to take them so I started taking two aspirin which took the pain away within minutes. I lowered the dose down to ¼ aspirin which worked just as well. I couldn’t understand what was happening I just knew I could walk again.
    Soon after I started experiencing the blurriness in my eyes, like looking through a kaleidoscope which would start small and then progress over my vision and then would disappear to one side (Ocular Migraine). It was in both eyes-if I covered either eye or closed both eyes, it would still be there. My optometrist couldn’t find a problem. I was also experiencing dizziness and many bruises but put those down to the aspirin.
    I guess the moral or this story is to get a second opinion and sometimes we have too much loyalty for our own good….my doctor of 25 years retired. I can’t blame that doctor for not knowing as ET is a very rare disease.
    Then one day I had a headache behind my eye, the mother of all migraines. I had to find a new doctor. I told her my story, she took blood tests which showed my platelets were 950 and I could possibly have leukemia. She tracked down the tests I had at the emergency room 6 years prior and realized it wasn’t leukemia as I’ve had the problem for too many years. OK, after many tests she said she had only seen one other patient with ET (thank God). All my symptoms “individually” meant nothing but altogether equaled ET. 3 months ago I was sent to a Professor of hematology who after many more tests and a bone marrow biopsy showed my platelet count at 1500 and he confirmed ET.
    A huge weight lifted off me. It had a name, IT HAD A NAME! I wasn’t crazy!!
    I was prescribed 2 Hydea per day & 1 aspirin for the first 3 months and now I’m on 1 Hydea per day. My last blood test was 690 and will be seeing my darling professor again this coming Tuesday. No apparent side effects yet but I can walk….I can see….and no more chest pains!
    My blood was as thick as pudding….too thick for the small veins behind the eyes and that ¼ aspirin was possibly saving my life. I wasn’t having heart attacks but my heart was struggling…. so I’ve been informed.
    It’s not about me….because I’ve had many symptoms I’m hoping my story helps others who may guide an unknowing doctor on the right path as ET is rare.
    Sybil xxxx

    • Hi Sybil!

      Thank you so much for posting your story. I know what you mean about being so relieved that everything finally has a name to put to it! All those ‘things’ that I’d complained about to people, and was starting to feel like they thought I was just some sort of hypochondriac for…now I could finally fit them all together and not feel crazy. It actually makes you feel justified. And best of all, now it can be treated!
      I wish you the best of luck with your treatment, and I hope you’ll stick around to share more of your experiences with us :).

      Julie

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