Low T-Cell - Bone Marrow Biopsy

Hi @loribmt

I read your message this morning while I was in the subway on the way to the head MRI, so thanks to you. It went very well. My dizziness has slightly improved today but is still very abnormal. I have this feeling that my gland, throat, and stomach are inflamed, I feel like my glands are getting activated and swollen which is very strange. They said it's not a lymph node as "cancerous" but it can still be a reactive node. I haven't heard back from the conference today...I wrote the doctor and hoping tomorrow he will write back. If not, Wednesday morning I will go to the emergency unless I wait til Friday to get the brain MRT results?

I totally get the new normal after covid, but to be honest with my friends here its like covid never happened haha 😛 I hate this fear of missing out and seeing my friends (or even worst my ex) having a great life. I know that I need to be patient, I am trying my best to be strong but at this point, I only want to go to the hospital and let them figure it out. My immunologist who made me do all the tests and to which we are waiting for the genetic testing told me "maybe you have to live with it" which drives me crazy and therefore when to look for answers elsewhere.

Thanks for the encouraging words about the vaccines. I got one out of 11 :D...I am just scared of the vaccine effect afterward but crossing my fingers it all goes well!

Sending you hugs and a great (sunny) day!

I was thinking about you today and hoping the MRI went ok. I wondered if the dizziness would bother you when you were lying down. Anytime I get vertigo, I can’t put my head back on a pillow or lean over.
It’s very encouraging that your doctor doesn’t feel your lymph node involvement is cancerous. Doesn’t make you actually feel any better but at least that underlying concern is eased a little.
Have you tried any oral, over the counter, antihistamine, the type used for allergies? Just to see if it relieves your dizziness? It’s something that has helped my mom, my daughter and myself when we’ve had bouts of vertigo. It’s the fluid in the inner ear that causes our familial issue. Just a thought…

Maria, I can really relate to the anxiety over all the vaccinations you need to get in the next few months. But being in a weakened immune state, the reaction you’d get from actually developing Shingles or pneumonia would be far worse than the reaction from the shots themselves. I had over 33 shots (including flu and covid) during the past year. Some of my vaccinations were done in incremental doses. I didn’t feel that I had any physical reaction to the shots except for really sore arms when I’d get 9 at one time. 🙄. The only shot I did react to was my first Covid vaccination and that was related to my transplant.
So look at these vaccinations for what they are. A means to prevent you from developing shingles or pneumonia. It doesn’t mean you won’t ever develop shingles but it can lessen the intensity of the symptoms. Have some ice ready to put on your arm and some analgesic to take for a possible slight elevated temperature and soreness.

You and I live similar lives. I have friends invite me to lunch, but if it’s in a restaurant I have to decline. I see people out with their families, not a care in the world and no masks. I don’t know how they are not getting Covid and it’s as though it doesn’t exist. And yet, in my area of the US the numbers are soaring again. I don’t live in fear. There’s still a ton of activity and enjoyment in my life. But I take it seriously and I’m educated enough to know how important it is to be responsible for myself and others. I’m sorry that your life is being so negatively impacted. Being immunocompromised can make us feel pretty isolated.

Keep me updated! I’m here for you. ☺️

Good morning @loribmt

The dizziness happens pretty much all the time whether I am standing or sitting. I also sometimes wake up in the night and feel some muscle weakness in my arms and dizziness. I do take the antihistamine because I have an allergy haha! I am wondering if they can see some ears problem in the MRI?

Wow, you are brave @loribmt 33 shots!!!! That's encouraging. You have been through a lot. I did a test for Shingle Reactivation and EBV Reactivation last time on an Antibody test.

I totally understand that there are indeed other activities and it's great that you were able to put boundaries. If I would be feeling fine, I would be okay with the immune deficiency and do everything in my power (including food & vaccines) to give me the best chance of not getting sick. I think I just need to find out what's going on so I can heal and set those boundaries. Now I live in fear and I feel stuck. Thank you for being there, I appreciate it a lot! I will give you news in the next few days when I go to the hospital.

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...

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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Thanks for being so reassuring! Do you feel like a pinch? I think they will give me an anasthesia in the skin first and then do it without Xray.

Do you know what they can see in the results?

I felt the coldness of the alcohol or I guess it was a betadyne wipe used to cleanse the area first. After that, I remember the nurse practitioner saying, ‘Here’s a little pinch’, when giving the local anesthesia to numb the area. But since it was still cold back there from the evaporating cleansing fluid, I didn’t feel the pinch at all.

There wasn’t any pain or discomfort during the test. I was aware of something being done back there, but since it was out of my view and numb it was really a non-event. Like I said, the nurse practitioner who did the procedure and her assistant were both carrying on a conversation with me the entire time.
The fluid itself is clear and the little tubs that the technician fills are sent to the lab for testing.

Here’s a list of test results that can be found with a lumbar puncture:
Serious bacterial, fungal and viral infections, including meningitis, encephalitis and syphilis
Bleeding around the brain (subarachnoid hemorrhage)
Certain cancers involving the brain or spinal cord
Certain inflammatory conditions of the nervous system, such as multiple sclerosis and Guillain-Barre syndrome
Autoimmune neurological conditions
Alzheimer’s disease and other forms of dementia

Obviously not all of these apply to you but you can see why your doctor wants to have the test run. It’s a good way to narrow down an potential issues you might be having.

That's reassuring, I hope I can keep calm 😀 That is all in the head haha!

How long is the puncture?

I am wondering if it could also detect viral infections or autoimmune that have no link with the brain eg: EBV or Lupus

A lumbar puncture is a great diagnostic tool to help identify or rule out conditions. The actually procedure lasted only a few minutes. The prep and explanation took longer than the tap. Don’t overthink this because your imagination is your worst enemy!
I know you can keep calm! ☺️ Use that stress relieving technique I sent you the other day. You said you copied it down. It will help keep you from fidgeting. 😘

Hi Maria. How did you did you do with the lumbar puncture ?
I know the results will take several days to get but was the procedure as bad as you anticipated? 😘