Low T-Cell - Bone Marrow Biopsy

You’re so right, we have to enjoy what we have now! Have fun with your sister and safe travels, my friend! Keep in touch! Hugs! ☺️

Hi @loribmt! I have been going through some hard time health wise and thought to come back to the forum as it has been helping me out a lot (mostly you!)

Since a month or so my symptoms have been strong in my stomach/throat and the tiredness very difficult with work. I am going through another gastroscopy next week and sonography and still waiting for the genetic testing which might take a few months still. I have also been thinking that some of the infections might not have been found in my blood test since my CD4 is so low that I need a big amount of blood to test positive for a test. That’s also what they are investigating.

2 months ago, I decided to accept another job opportunity which is a big career step for me with a salary that double. I accepted the role thinking I was feeling okay but now I doubt my physical ability to do it and Im not even excited as its giving me stress. I can still revert to the previous job most likely if I talk with my boss if I do it very soon. Its a great job as well (been there for 3 years). I do feel very heartbroken and confuse what to do, when I have good days I’m grateful but when I have bad days I just want to hang in there and enjoy this stability. Having a new high position job is demanding, and also risking to be in probation.

I would really like to hear some advice from you, and your experience handling sickness and work. I need to take a hard decision right now.

I hope you are good and still enjoying live very much. It looks like you did become a major contributor to this forum. Big congrats! Its so valuable.

Aw, Maria, I’m so sorry to hear you’re still struggling with this! It was the same time last year when we first met, so this is sad to hear you’re not very much improved and that there still is no diagnosis. This is so disappointing and frustrating for you. And with a new job… oh gosh, I don’t really know what to say.
When I went through all of my illness I’d already been retired for many years. So working and obligations weren’t an issue.
I’m so proud of you for taking on a new job but this sounds like a real stressor for you. In my humble opinion, and I may be wrong, but if you can return to your previous job that might be better for you?? The stress would be less, you’re not going through that demanding probation period where you need to be in peak performance mode. You know your boss, the people you work with. I have a sense that it may at least bring you a level of predictability and peace while you deal with this unknown health situation. Does that make sense?
Hopefully other members in Connect, who are going through similar situation, will be able to offer you some better advice. But from my “old bones” perspective, your previous job may offer some calming stability.

You are a medical challenge to your doctors, that’s for sure. That low T cell count is usually an indicator of an infection going on. Or something is slowing the production of these all important cells in the first place. The T-cells are a major part of your immune system that fights infection and prevents you from getting ill. When that count is low, you are more susceptible to any and all infections. So you do need to be cautious to avoid illnesses, get a lot of rest and eat healthy, which I know you’re a already do.
I remember you tested positive for latent EBV. Does your doctor feel this may be contributing to your low count? I hope they can isolate the cause of the low white blood count and find some relief for you.
Was everything else on your latest CBC ok? How are your other blood numbers?

Hi @loribmt,

I can't seem to find our last conversation 🙁

I took your advice and rejected the new job. I am so grateful I did that. Thank you so so so much for your beautiful advice. I can't imagine myself starting a new job with my recent weeks.

My health has been absolutely awful lately. For the last 2-3 weeks I have had very bad dizziness, such as a feeling of falling in the floor and being "high". I had 2 panic attacks following the dizziness which almost brought me to the hospital. The feeling of dizziness remind me of the time I had a bad trip with Cannabis edible and brought me back to this state of mind of "I will be dying".

I did another gastroscopy which came back again with mild gastritis with no sign of infection. I am still waiting for my full genome sequencing to be completed with my family which has taken a year now. The infectiology team will talk about my case on Monday with the Head of the department to see if any other tests can be run on opportunistic infections. Also, I am supposed do another brain MRI on Monday but I am really debating just going to the Emergency department to run tests and maybe get the chance to see a rheumatologist as I am barely able to go out for a week. In the past, I did tests a bit everywhere because it's very hard to see a specialist in this good hospital if you are not in-patient.

I feel absolutely hopeless and depressed of this dizziness which just makes it unbearable. I still experience this tongue soreness, feeling of swollen salivary glands under the jaw, cough from the stomach, and feeling exhausted.

I just wanted to share my updates and hopefully, someone has maybe some similar case or opinion on what to do there. Emergency? Other tests?

I hope you are enjoying the spring with your family and that you are doing well xx

Maria

Oh Maria, I feel so crushed for what you’re going through with no answers. I’m glad it was good advice with not taking the new job. In my heart I just felt it wasn’t the right time for you with not feeling well. That’s one less stressor for you to take on at this point.

I know you had Covid and I’m wondering of some of your further complications, over and above what you were already going through, might be some long-haul Covid symptoms. There are numerous conversations in our Post-Covid recovery group regarding some of your current symptoms including the extreme dizziness. https://connect.mayoclinic.org/discussion/post-covid-dizzinessoff-balance-as-most-troubling-symptom/

Being dizzy is so disconcerting! Were you able to check with your doctor to see if this was an inner ear infection or a misalignment of inner ear crystals? https://newsnetwork.mayoclinic.org/discussion/mayo-clinic-q-and-a-bppv-dizziness-caused-by-inner-ear-crystals/

My heart goes out to you, my friend. I wish you had a friend or relative living nearby to help you out. It has to be doubly frightening to go through these events alone. Panic attacks are just awful. I used to have them 30+ years ago and it really felt like it was going to be the end of me! I had bio-feedback sessions to help me learn to control the sensation when it came on.
Some good techniques now for panic attacks are to preempt them with this little tool.
When you feel overwhelmed, focus on:
5 things you can see: Your hands, the sky, an ant on the sidewalk
4 things you can physically feel: Your feet in your shoes, a pen in your hand, a breeze on your cheek, air in your throat when you inhale
3 things you can hear: The wind blowing, children’s laughter, your breath
2 things you can smell: Fresh-cut grass, coffee, soap
1 thing you can taste: A mint, gum, a bite of chocolate

This will help refocus and redirect your anxiety. It works really well. I know longer have panic attacks but I still rely on this little too of 5 Things when faced with anxiety.

By the way, our last conversations appear right above this one in chronological order.
Maria, I hope you find some answers soon. If you feel going to the emergency department to get some immediate help and possibly see a rheumatologist can you help sooner, I encourage you to do what you feel is necessary to get help. In the US, your symptoms would be treated in the ER, but most likely nothing would happen on a weekend unless you were ill enough to admit. Things might be different where you are!
I also hope something positive comes out of the meeting on Monday when your case gets discussed with your team and the department head. It is reassuring to hear you are getting some continued and collaborative care. You’re not being dismissed and they are taking your situation seriously. I’m sure this is equally perplexing to them!

I’m here anytime you need to have some moral support. Wish I could reach through the computer to give you a hug. Can you listen to some soothing music or an audio book while you rest?

@loribmt thank you for the quick answer and calming words. Thank you for the tips on the panic attack. I did screenshot them for the future.

You are right, the ER might not be a good idea on the weekend. My doctor did tell me to go to the ER if I felt too dizzy and that they could admit me and do some tests again. Therefore, I am not sure what to do, if I should wait until Monday end of the day or Tuesday?

I also just feel that it's hard to work and that I am seeing everyone outside and I can't do things. I also feel that there are no next steps. I did check my inner ear a few months ago...I would also like to check it again as mentioned it was a random doctor, not part of the hospital I am going.

I had covid in July and I started to feel dizzy a 3-4 months afterward so I doubt it is that. I got more dizzy after the cannabis bad trip but it got better. I had a shingle vaccine afterward, maybe it is that? For my immune defficiency I need to have 11 vaccines (shingle, pneumonia, hpv etc) to protect me, now I am scared.

This entire pandemic has left even the heartiest of souls feeling like they’re foundering when it comes to seeking normalcy. I only see friends outside too! Or if we’re in the house we all wear masks. The intimacy of normal friendships, where we can be together eating and laughing while seeing actual smiles, takes it toll. So I’m sure you’re feeling some of that too…along with these debilitating symptoms your having.
I know you’re so frustrated by all of this. But don’t feel that there are no next steps. Your doctors aren’t writing you off so that’s a really positive sign. They are still pursuing answers to your perplexing symptoms. So please stay encouraged by that news. And hopefully the genome sequencing returns soon too so that you can see those results.
Definitely, if you feel horribly dizzy, follow the advice of your doctor and don’t wait until Monday or Tuesday.
Is there anything you can take for the dizziness? When I get vertigo occasionally, I take Benadryl, which is an over the counter anti histamine. It helps take the dizziness away. It might be something to try.
If your MRI is scheduled for Monday, I wouldn’t delay having that done, unless you aren’t able to lie on your back comfortably for the procedure if you’re dizzy.
When I have MRIs taken, I request a small dose of a relaxant to help me lie still. I fidget a lot. 😅
Let me know how everything goes! Huge hug!

Maria, as part of my recovery process from the bone marrow transplant I had to receive all of my childhood, adolescent and adult vaccinations again over the course of last year. It’s important if you’re immunocompromised to have protection against some of these possible infections. I wasn’t a fan of this either but other than sore arms for a few days I didn’t have any negative side effects.
I would expect you’ll have similar results. ☺️

Good morning, Maria. Thinking of you as you begin your week. I hope you’re feeling much better today. I wanted to wish you good luck with the MRI and let’s hope the doctors have a productive meeting and come up with answers for you.
Are you less dizzy today?