What might this be? polycythemia vera, PCOS, lupus, something else?

Posted by tiffaliffa18 @tiffaliffa18, May 7, 2023

Polycythemia with all negative results????????

I am a 29 year old female and have been feeling not myself for almost 2 years now. Below I will explain every symptom and every test result. I am hoping someone in here will either have a similar story or can help! I am weak, tired, forgetful, sweating during sleep, extreme anxiety and social anxiety with red blushing face, hairloss, and hair growth all over body. I used to be fun and happy and went all over to try new adventures and now I don't leave my house. It's been a drastic change. My CBC is as followed:
WBC 11.5
RBC 5.87
HEMOGLOBIN 17.5
HEMATOCRIT 51.0
RDW 11.8
there numbers have stayed pretty much the same for 4 different CBC.
I've had a sleep lab done, I've had MRI on abdomen, I've had ultrasound on abdomen, I'm on anxiety and depression medication.

Every morning I wake up and feel hungover. I am tired all days everyday and I feel dizzy. The sunlight bothers my eyes and my legs hurts. I can't focus at all and I'm emotional. I get skipped periods. I am overweight and I smoke marijuana occasionally. I've had test done for JAK2 gene and leukemia and everything is negative. I am being sent for an MRI of the brain and a EKG of the heart to check my vessels because tbe hemoglobin has bot gone down. What could be wrong with me!?!?!? I feel like right before you get a cold groggy and horrible. I'm just so tired of not feeling like me. Anyone has similar results or story ?

Interested in more discussions like this? Go to the Blood Cancers & Disorders Support Group.

I believe I have inflammation or an infection maybe somewhere throughout the body. Or maybe not. I just am not sure !

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This is totally messing with my mental health because I feel like maybe it's all my mental state and I'm over thinking or am I sick

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Hi @tiffaliffa18, I see you've posted to several different support groups. I have merged all your posts together here so that you don't have to monitor different threads.

I can see that you are worried and don't yet have a diagnosis. It can be worrisome to see your lab reports and then to be sent for further testing. I sounds like your doctor is being very thorough.

Did they explain what condition might be suspected or that they wish to rule out the brain MRI and EKG?

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PCOS, menstrual issues and elevated blood
I'm not sure if this is hormonal or if I'm sick

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@colleenyoung

Hi @tiffaliffa18, I see you've posted to several different support groups. I have merged all your posts together here so that you don't have to monitor different threads.

I can see that you are worried and don't yet have a diagnosis. It can be worrisome to see your lab reports and then to be sent for further testing. I sounds like your doctor is being very thorough.

Did they explain what condition might be suspected or that they wish to rule out the brain MRI and EKG?

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Yes I wanted to ask in several different areas to see where I may have the most in common with symptoms. So thank you for fixing that ! Also yes I've been to tested for everything under the sun and more to come. They said the MRI is for vessels/vasculature and the EKG is for metabolism syndrome? Which I'm not sure about either of this. My first doctor was absolutely sure I had a sleep apnea issue which I didn't and I knew I didn't have any issues breathing during sleep. It's been a stressful journey and I just want to speak to people who have similar stories and feelings. Thank you!!!

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@tiffaliffa18

Yes I wanted to ask in several different areas to see where I may have the most in common with symptoms. So thank you for fixing that ! Also yes I've been to tested for everything under the sun and more to come. They said the MRI is for vessels/vasculature and the EKG is for metabolism syndrome? Which I'm not sure about either of this. My first doctor was absolutely sure I had a sleep apnea issue which I didn't and I knew I didn't have any issues breathing during sleep. It's been a stressful journey and I just want to speak to people who have similar stories and feelings. Thank you!!!

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No problem. Your discussion appears in multiple support groups now. 🙂

No doubt that this is stressful. But it sounds like both you and your doctor are being persistent in searching for a cause. Hopefully with several members seeing the list of your symptoms, someone may have something similar to help you as you search for answers and a diagnosis.

I think the biggest part you have in your control right now is to work on managing your stress. Being worried about being sick is stressful and is bound to increase anxiety levels and wreak havoc on your ability to focus. Do you work with a therapist? Do you have things that help calm you?

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@colleenyoung

No problem. Your discussion appears in multiple support groups now. 🙂

No doubt that this is stressful. But it sounds like both you and your doctor are being persistent in searching for a cause. Hopefully with several members seeing the list of your symptoms, someone may have something similar to help you as you search for answers and a diagnosis.

I think the biggest part you have in your control right now is to work on managing your stress. Being worried about being sick is stressful and is bound to increase anxiety levels and wreak havoc on your ability to focus. Do you work with a therapist? Do you have things that help calm you?

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Thank you! I am hoping the same. I do agree with the stress and no I don't have a therapist it's so expensive for me right now and because of how bad I've felt I haven't worked in a year. And no I have not a lot of calm around me. I am going to work on that and maybe getting some walking in everyday to keep my brain and body moving

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@tiffaliffa18

Thank you! I am hoping the same. I do agree with the stress and no I don't have a therapist it's so expensive for me right now and because of how bad I've felt I haven't worked in a year. And no I have not a lot of calm around me. I am going to work on that and maybe getting some walking in everyday to keep my brain and body moving

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I'm tagging @sueinmn and @gingerw who have great suggestions about coping with anxiety in the face of stress.

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@colleenyoung

I'm tagging @sueinmn and @gingerw who have great suggestions about coping with anxiety in the face of stress.

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Sounds wonderful. Thank you!

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@tiffaliffa18 Wow, that is a lot to deal with, isn't it, all at once! I can certainly understand how this affects your everyday life.

A few things that I have found help me is to distract myself from focusing so much on symptoms. Take time each day, perhaps 15 minutes or so, and consider what is going on. Then, set that aside until the next day. I know that sounds like a real challenge, and yes, it is! Write out your feelings longhand and get those thoughts and feelings out of your head.

What are things that could help distract you? Gardening, exercise, getting outdoors for a walk or a sports activity you like [you don't have to be an expert, just something you enjoy!]. Something creative: painting or throwing pottery, or textile work like crochet or sewing, making jewelry for others. Cooking, recipes you love, then a new one you've always wanted to try. Get out the instrument you put in the closet and play, or go listen to live music! Meditation of any sort.

Take time to write out your symptoms and when/how they occur. But do not dwell on them. Act like it is a report you are preparing, which it is, and can be team used for your medical team.

Does this sound doable?
Ginger

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