That lonely feeling

Found out today that yet another dr has refused my case. That makes 6 hematologist and two internal medicine Dr. I really haven't felt so alone with no where to turn before in my life. My platelet test got messed up again and clumped so no total and my nurse practitioner has no idea what to do for me because she has no direction from a specialist. The one hematologist that was looking after me in the hospital has dumped my case and gone on maternity leave and the Dr that took over her patients will only see me one time with no fallow up. They found my platelets low in May and I won't see this hematologist till Nov. my stress level is going off the chart and then the nurse practitioner says they will have to find someone to do the bone marrow biopsy to rule out lukemia. I checked the symptoms for lukemia and I don't have any of them. I'm scared to death to have that test. Just venting because this is the only place that I know there are people that understand.

16 Replies

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  • Where abouts are you, it's sounds like a bad service you are getting.

    The should be able to rule out sinister things from bloods or at least confirm, or put ones mind at eas.

    What number are Platelets at?

    May

  • I am in northern Ontario Canada and there are no hematologists in my area. They have checked every location around me and no one is taking patients. I've been told I may need to write the health minister to let her know my issue. My platelets drop to below 30 when they ween me off prednesone so they are keeping me on it

    I have had no symptoms but last night I got so upset I had a small nose bleed that cleared in only 5 min.

    Thanks for responding

  • Maybe there is something about the way your platelets are tested? When mine are tested they use a citrate tube. My results came out wrong before they started to use that, due to too long stasis time. The platelets clotted when they used tubes without citrate.

    Maybe you should ask the nurse if she orders the tests to be taken with a citrate tube?

    Hope you understand me. I'm Norwegian

    And I have taken the bone marrow test 10 times now. Some times it hurts a little bit, but most of the times it' s almost painless. There are many other things that hurt more than bmt❤️🌻

  • They are using the special tube but they still sit on it too long and it clumps. My platelets while on 5 mg of prednesone are 62 2 weeks ago but my np is worried because she doesn't want to keep me on prednesone and when they ween me off my platelets drop to below 30. She won't try anything else because she is inexperienced with ITP.

  • I know it is hard to deal with at times itp is such a unknown territory I also feel stress will not help you Anthony Heard our itp administrator will have lots of information for you his blog is amazing and you will not feel so alone please read ITV: ) ...we all have a coping mechanism myself I take a long hot bath with a good book I know it is very simple to say this you just have to look at the wider picture there are so many life threatening illnesses out there in many ways we are very lucky in some ways not so lucky ( no answers ) life throws things at you to make or break you myself I choose not to be broken and yes you can always vent on here myself I go to a field and scream.

  • Thanks I'll look for that blog.

  • It will help it has every feeling imaginable and you will relate trust me I did ... There is lady who has written a blog also maybe try putting your feelings on paper .. I am goingbyo find it now send you the link : ))

  • ITP And Me it is called goggle : )

  • All peoples personal journeys with itp it helps to understand this illness a bit more hope this helps.

  • Hello

    I'm in Ontario Canada but not in the Northern area. If you don't feel you are getting the practioner support I would suggest to go into city area for a second opinion. It may be inconvenient but you will need to find a GP to get you a referral for a hematologist. Where abouts are you in the Northern area? I first started with ITP last year and found that I was in the 30 range through routine CBC. They scheduled me to do the bone marrow biopsy and all other blood tests to rule out other conditions. This was all done over a 1 month period time. Now I'm seeing a hematologist on a as need basis as it seems my condition has improved since changing my lifestyle, eating and managing stress levels. But initially when you are diagnosed with ITP and in the 30 range it's hard to comprehend because you have many things going on your mind. I would go definitely try to go into city area where there are more hematologist to see you so that you can put your mind at ease and live your life.

  • They have tried from TO to Sudbury, Newmarket and they have all refused. My only hope is that the Dr that took over for the hematologist that looked after me in New Market while in hospital will take pity on me when I see him in November and take me on. November seems along way away and I'm worried about being on steroids because I have an enlarged heart that showed up when ITP did. I'm in muskoka On

  • Newmarket Hospital try SouthLake, I would go in as an ER patient so they can diagnose you or try Mackenzie hospital. That's is where I went. They have onsite hematology at the hospital. They cannot refuse you if you hAve low platelets level which are deemed to be unsafe and if you are having any symptoms. If you don't have symptoms then you are ok. Some ppl live with 20-30 no meds and they lead a normal life

    L

  • I was already in south lake hospital for a week. I had ivig there and it failed and they released me with a prednesone prescription but only my np at home to follow up. Oh believe me I've tried every way to get a hematologist. Thanks for the suggestions

  • anthonyheard.simplesite.com the blog I was telling u about : )

  • Your story is terrible! I wish I had some advice, but I can offer you my sympathy. I'm having a similar experience with the CFS/ME that started when I was on Rituxan. What reason do these doctors give for turning you away?

    Ruth

  • They say I'm out of there area. I finally started writing a letter to the minister of health. There should be no one who needs a specialist that should be turned away. My np said that she feels the prednesone isn't helping so she is weening me off over the next month to see how low the platelets fall.

    Thanks for the sympathy. Just knowing there are others with similar issues helps.

    Wendy

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