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Low T-Cell - Bone Marrow Biopsy
Blood Cancers & Disorders | Last Active: Nov 15, 2022 | Replies (162)Comment receiving replies
Hi @loribmt,
Just wanted to give some updates 🙂 I saw the Head of Infectiology at one of the good hospitals here. She did another EBV test and ASO titer (since mine was high 1.5 years ago when my symptoms started). She asked me to take one antibiotic pill a day (the one I take for my immune deficiency 3X a week) to see if somehow I would feel better with more antibiotics. Ultrasound show slightly enlarged neck glands and spleen but not cancerous.
Since my brain MRT came back OK, they will proceed to a Lumbar Puncture (which I am quite anxious about, I hate needles) on Monday for the dizziness. From there, I will see the doctor again 1 week after for the results. We will do some trials, probably some antiviral and some corticosteroids to see if something could feel better (unless something is in the Lumbar Puncture).
I have noticed that I feel dizzier after eating and my whole GI tract including my tongue and glands seems inflamed and painful pretty much all the time. Again, the medication for gastritis does nothing. I am really wondering what it could be...My ANA is positive but all autoimmune tests are negative? Could EBV do that? Lupus?
Again such a puzzle...
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Hi Maria! You are a woman of mystery…in the medical world. ☺️.
It sounds like that ‘meeting of the minds’ last Monday produced a good treatment/research plan going forward! It’s really encouraging to see the level of care you’re receiving. The further tests you’re getting will help narrow down the list of possibilities.
I hope I can help reduce your fear of the dreaded lumbar puncture! I can’t tell you the level of fear it sparked in me when I first saw it was on my list of testing in my cancer journey. Out of all the things I went through, I feared this the most!
Wow, was that unfounded! It turned out to be one of the easiest, painless tests I had. I’ve since had 2 more and again, no pain during or discomfort afterwards. Some people develop a dull headache up to several days later but I never experienced that. I was instructed to lie down as much as possible for the remainder of the day after the procedure.
It was suggested to go into the test well hydrated. So drink more water than usual the day prior and then after the test too. Not sure if that actually helped but it’s good to stay hydrated.
Some lumbar punctures are done with the patient sitting up, but with all 3 of mine, I had to lie on my side with my knees curled. The technician did the procedure very slowly, talking with me all the time…yes, I was even laughing with her. I hardly knew I was having anything done. The other two times were accomplished with X-ray guidance. That was even faster. I’m not sure which technique will be used for your test, but they’re both easy peasy.
Hang in there, my friend! I know this is so frustrating and it’s draining to feel so miserable all the time. But you have a great medical team looking out for you and trying to get to the bottom of your mystery.
Keep me posted! Are you less fearful of the Lumbar puncture now?
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