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Low T-Cell - Bone Marrow Biopsy

Posted by mariabrat @mariabrat, Mar 16, 2021

Hi,

I am 31 year old and just had a bone marrow biopsy. After 4 months of tests : MRI (Brain, Abdomen), CT Scan (Thorax, Throat) and very detailed blood test at the hematologist including autoimmune disease, HIV, tropical diseases, viruses nothing was found.

The only symptoms I have is slightly enlarged spleen, on and off chest and throat discomfort/cough, extreme tiredness in the morning. One day I feel fine, one day I don't feel great. It feels like "something is getting activated" except the tiredness remain constant.

Since the T-Cell are extremely low but everything else is perfectly fine (pallets, red blood cells, immunoglobulin, protein levels) they are not "TOO" worried about cancer but they still wanted to rule it out with a bone marrow examination. I am extremely worried and I can't sleep, thinking I might have cancer.

If you have any opinions, advices or tips, I would highly appreciated.

Maria

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Mentor
Lori, Volunteer Mentor | @loribmt | Nov 15, 2022
In reply to @mariabrat "Hi @loribmt Thanks for your positive energy. The infectiologist did test all nasty tropical diseases and..." + (show)
@mariabrat

Hi @loribmt

Thanks for your positive energy.

The infectiologist did test all nasty tropical diseases and it was all negative - just saw I had a few herpes once’s in the past (like CMV etc).

I went to the cardiologist and they saw 1 Type II SA block during the night – which when I google seems very serious and I am very anxious about it. They said everything looks fine and they do not recommend the procedure but they can't be 100% sure so if I really want to do it they will.

Tomorrow I’ll go see the POTS doctor - maybe there is an answer there. Otherwise, I begged my doctor to try antiviral…

Jump to this post

Thinking of you today, Maria. I don’t know anything about cardiology so I’m not familiar with the Type ll SA block. If you had the procedure mentioned yesterday, to check inside your heart, what would they expect to find?
Would it be worth the risk for you? Personally, I mean. If you went ahead and had this done, would it help you feel that you exhausted all your options?

Fingers cross the POTS doctor maybe can help shed some light on your symptoms today. You have quite the team of doctors, my dear. Do they work collaboratively, sharing information with each other?

REPLY
mariabrat | @mariabrat | Nov 15, 2022

Hi @loribmt,

I just came back from the doctor. Such a kind person (we need more of those). The plan is that I will be going in-patient for 2 days in December where they will do an autonomous system test where they use a tilt table and check your heart rate, breathing, blood pressure. Unfortunately, this will not explain any of my T-Cell deficiency or my throat/stomach issues but this can "add-up" to the diagnosis as they. Unfortunately, POTS has not had much treatment, and medication often not work since its often secondary to another cause (eg: autoimmune).

In the meantime, I am waiting for the infectiologist to come back to me on the heart topics as she is coordinating, hopefully, they will start to do some trials (antiviral perhaps), lets see what she says. Other than that, I am coordinating the rare disease/genetic part by myself but I have 1) a genetic counseling session in December to do a new analysis from scratch 2) I will pay separately for a lab in the US to reanalyze my current data 3) My data will get re-analyzed form an AI platform. Lastly, in December I am going to the Rheumatologist.

REPLY
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