Please help I am terrified!

Hello everyone,

This is my story, I have been feeling in unwell for now a whole year. Extreme extreme fatigue, pain in bones, night sweats at times, I have seen numerous doctors done numerous tests, my doctor finally said he thinks it could be fibromyalgia and chronic fatigue syndrome. Lately I saw an optometrist that checked all my labs and found my hemocrit hemoglobin and RBC where are slightly elevated, I have done 20 CBC with differential and all were elevetated. Typical numbers are RBC 5.59

Hemoglobin 16

Hemocrit 47

My primary doc said yes elevated but not tremendously, I asked for referral to hematology but waiting is pretty long. I begged my doctor to put urgent but said the WBC was ok (slightly elevated) and the hemocrit was not that bad. In the meantime I lost wait, especially in hands, I have night sweats, rash that is red little dots, pain in bones where I have burning aching pain. And I am loosing TON of hair. My doc has treated me for depression and axiety and thinks it may be chronic fatigue syndrome. I get it I have that but I was fine till all this happened! I had to give up my job because of fatigue!! Any of you recognize PV in this?? I am desperate I have 4 kids and I loving husband that has taken over house work cooking and cleaning! I am of no use!! I am to the point of almost ending it as I know my body is deteriorating fast! I almost wish they could tel me "yes it's pcv" but I have a feeling I might have leukemia. Or advance stage pv. Please any of you recognize symptoms??

I live in us and our healthcare system is waiting waiting for insurance to approve doctor visits and then more waiting for actual specialist appointment. I feel I don't have that much time!

Sorry I feel lonely and desperate!

Lidia

25 Replies

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  • Anyone please?

  • Hello Lidia, I am so sorry to read your post, you seem to be very desperate and anxious about your fatigue and other symptoms. I am afraid that we cannot give you a diagnosis over the internet like this, we cannot from what you are telling us tell you what you have, this would be dangerous and completely wrong for anyone on this forum to do so. I appreciate that you are scared and feeling very afraid, but all I can advise you MOST STRONGLY is that you speak to your doctor immediately about these feelings of ending it. Please seek medical advice immediately about these feelings and discuss with your doctor why you feel that you have PV or leukaemia. I do hope that you feel better soon. Best wishes, Maz

  • Lidia ...please don't feel alone as I'm sure you will have some replies very soon .

    I have ET so can't really answer your questions but there are lots of very nice supportive people on here with PV . I too was very stressed with symptoms but had some great advice and support from the forum and Maz can send you information . Sending you lots of hugs .

  • Thank you! I was just wondering if anyone with pv had similar symptoms and if the blood was somewhat similar to you guys

    Thank you for replying!

    I truly appreciate it

  • Hi, please don't feel so alone. As Maz has said we can't diagnose as we are fellow sufferers. I certainly suffer from fatigue, night sweats,etc and I have POlycythemia but that does not mean you have the same but you must insist on getting an urgent referral because you are so anxious as this will make you ill too. You need answers. My symptoms were fobbed off at the beginning as depression as I had just lost my mum and dad and was trying to live in the same house as a nasty mother-in-law.

    Please insist on a referral, even if you stand there until you get one. I'm far more assertive than I used to be since my polycythemia was diagnosed. Go to the appointment with everything written down and get your answers.

    In the meantime give into the fatigue when you have to, drink plenty of fluids but eat well too, including treats - you need them. Once you get a diagnosis and start treatment you will then feel you have some control over your life again. I also send you loads of E hugs and please keep in touch and the lovely people on this forum will help you - they are a great bunch!!

    Kindest regards Aime xxx😺😺

  • Wow thank you Aime!!!!

  • No problem, you take care.xx😺😺

  • I am with Aime and what she has to say, I am P V ,still suffer bouts of depression that I cannot do what I used to do so easily,the fatigue is awful and you must rest when necessary.My very caring and understanding Medicin General,prescribed me a mild anti depressant ,which I take when needed,also I had counselling to help me deal with the diagnosis at the hospital where I was diagnosed,I don't feel ashamed of needing such help,it is a life changing maladie we deal with.You will get lots of help on here,it stops being a lonely disease when you can chat with others in a similar situation.Very Best to you ,keep strong ,more e hugs!!!

  • Thank you so much for your reply, What were your blood level when you got diagnosed and what led to the diagnosis if you don't mind me asking?

  • Tiredness,red itchy eyes and skin,heavy painful limbs,breathlessness,hair and nails breaking.....my Dr in U K said I was 'doing too much 'for my age!!! Came to French house,even my dog knew I was seriously ill by then,!!!!Saw Dr here,who took one look and had me in hospital emergency,my H c T was 80plus,they could not get blood it was so thick!!!Consultant said I was lucky to be alive....but I am still and O k mostly......You will be too,I think it is important to have a Dr and hospital who know about P v and other blood cancers,thank goodness for M P N voice making awareness ,best wishes and keep strong.

  • I also have the same symptoms as you but I have ET JAK2+. I used to get very itchy red spots on my legs and feet. As all the others above have said, you need to get a proper diagnosis. For now be kind to yourself and also forgive yourself for not being able to function as you used to until you know what you're dealing with.

  • Hi,

    I hope you have found some comfort in the replys you have so far, I can relate to all your symptoms, the physical ones you describe are similar to mine and I have a diagnosis of PV and agree with the others that only a Dr can diagnose you. As for the mental side, I was in denial for the first 10yrs (now 17yrs in) I have been for CBT ( cognitive behavioural therapy) and have seen a health phycologist, these sessions helped me greatly as I used to feel inadequate and useless and have had a few meltdowns posting on this forum,

    I am now more positive, although fatigued and unable to do all I want too in a day, I am still doing the things I love as I have learnt my limitations and pace myself with regular rest breaks.

    There is no shame in asking for help, It sounds like you have a loving husband, take time to talk to him I am sure he will be a sold rock for you as my wife has been for me, please do not give up, you are not alone.

    Good luck,

    Ourlife

  • Thank you all very much! The hematology oncology appointment can't come here soon enough!! You guys are inspirational!!

  • Ps: my primary provider said that with PVR my hemocrit would have been higher??

  • Hi, if you go to the MPN Voice website it will give you information about levels in the blood as we are all different. There is a recommended level for the hematocrit on there so I hope that helps. Kind regards Aime xx😺😺

  • Sorry Aime

    I tried to go on website you told me for the blood values under polychythemia but didn't find it, is it under something else?

  • Hi no problem try mpnvoice.org.uk. Kind regards Aimexx😺😺

  • Hi Llfallis72, it appears so many of us have the same symptoms and everyone is so supportive, even when we don't have much to say, everyone seems to have covered various points you mention but one little tip I found for relief of the little itchy red rash is to plaster on 'Vasaline' as I was told it was down to extremely dry skin, mine wasn't looking dry but felt tight, so, I bought a small jar and slathered it on within three weeks my skin was clear. I made the mistake of easing off, it is now back to square one and so once again I am using the 'Vasaline' it doesn't cure it , it doesn't do any harm but it does alleviate the rash and itch. I felt it was worth a try , Hope it helps you too. June x

  • I have extreme itchy scalp too and always thought it was dermatitis , what scares me is the enormous amount of hair I am loosing everyday and night, I went to a full head of hair to a very thinned out head in a matter of few months. Every time a run my hand through I get 10 or more hair out, every time🙁

    I am 44 so I don't think it's menopause! Any of you with hair loss?

  • Hiya. I'm sorry to hear your story and i hope you have found some comfort from the above answers.

    I was diagnosed with PV in Jan of this year. I'm 38 and a few matters had led me to my doctors last year at the start of my journey. Towards the end of last year, in the middle of lots of tests, my hairdresser found a bald patch on the back of my head. Long story short, my hair is growing back now and it looks to have been very low folate levels that were responsible for that amongst other things.

    I've found that exercising regularly, drinking at least 2litres of water a day and eating better have improved my overall health. Obviously I can't say if your experience is the same but perhaps like a lot of us here you'll want to take control where you can like diet and exercise to see if it helps.

    I hope your journey improves and you get some answers soon - not knowing and therefore not having a plan to move forward with can be very disheartening. All the best x

  • Wow I just checked my folate done 1 year ago and it's right at the beginning of lower end! Also I noticed my vitamin D is way lower than bottom number! I also have iron at 30 but how could it be if my hemoglobin is high? Paradox!

  • Yes, I've an appointment with my GP this week to discuss folate/ iron levels and their relationship so I can straighten it out in my own head!

  • Write a post so I can understand too😊

  • Hi Lidia

    I am so sorry you are feeling so terrified. I can really relate to you though as any diagnosis is scary. Hang on in there the medical professionals are great. Just a quick point to you that Hematocrit .47 is elevated ( not slightly ) . 45 is the top end for a male. As a female my comfortable Hematocris is .38 anything above that and I am a mess. It has taken 7 years to work this out with my team. We are all different. Stay strong. xxx

  • Thank you your words mean a lot! Still waiting for a hematology appointment, I am so fatigued I can hardly function! My heart rate has been somewhat high too so I wonder if that plays a role too. Do you have pv?

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