Low T-Cell - Bone Marrow Biopsy

Maria, I was looking at your numbers compared to mine. You see, I was born all messed up, my entire body had major health problems. Some things concerns me, you IgG for one, your kappa light chain, low T cells etc. I have what’s called MGUS for short, a blood disorder. I have been diagnosed with Kappa light chain IgM MGUS. It’s a precancerous condition that can progress into cancer, the optimal word is “can”. Of the 3 main imuglobulie, IgG is the most common, IgA is next and IgM is rare. Have they done 24 hour urine collection test yet? Or how about a Auto Differential test yet. Since my MGUS is progressing into cancer, either Multiple Myeloma or a rare form of Non Hodgkin’s Lymphoma because my B Cells are mutating. The B Cells are the first line of defense in the body. They initially attack an invading bug and fight a battle while making antibodies to kill the invaders. Then once an antibody is made, the T Cells are the killer cells and if the same bug would get in you, the T Cells would destroy it because it recognizes the invaders. That’s why your low T Cells results seem out of place, like your body has been fighting a battle and your body doesn’t have enough time to mature small immature T Cells.

I’ve gone thru a number of the the same test trying to find why certain things are happening to me. Have they done a paraprotein test on you, they do me. It determines if my paraprotein is increasing, meaning my MGUS is progressing or increasing in other words. It’s called an M Spike. Have they checked you for MGUS, although it usually doesn’t occur till you’re over 50 and men ate more likely to get it. I hope you find the answers you’re looking for. I was born sickly and at almost 80, my body is still battling to stay alive. Good luck.
@becky1024

Hi Maria! Sending you a virtual hug and wishing you safe travels today. ✈️ 😘

Hi @loribmt!! Thank you!! Sorry I did not get a notification. Im finally back after my flight being twice canceled haha but made it! I’m stil not going well and my heart feel like squeezed and sometimes painful, I am barely able to go around and feeling fine, but still do it. I found an appointment tomorrow morning to the cardiologist, it’s not the same as where my immunologist is as it might take weeks, but he seems to be fine. In the meantime, I had receive my results from the cardiostat - they did not see any arythmies, but there is tachycardia - they are still unsure why? But they seem to think it’s not serious and dismissing a bit my issue…I will tell them tomorrow the story and also that my heart beat is reducing after effort instead of going up. Anyway, still very very worried but really trying to find small joy everyday. I have an appointment to the infectiologist this Friday and Immunologist next week. How are you ok your side :)?

Hey Maria, Glad you’re back home safe and sound! It’s great to hear you already have a cardiology appointment today! Wow, that was fast. I really hope they can get to the bottom of the tachycardia events. At least now you’re in home territory and can have some consistent care.
You were able to get some good information from your visit in Canada. Fingers crossed that all the data collected will put the puzzle pieces together so you can get a diagnosis!

I know this is so frustrating and difficult for you, but I’m loving your attitude of finding some small joy in every day. I truly believe it is a vital for our overall wellbeing. ☺️ Let me know how your appointment went! Hugs.

Hi @loribmt,

I went this morning and I was so frustrated, they only did an ultrasound and said "they did everything" it's probably your disease that you have.

So I was like: Ok but how come my chest squeeze and I have pain? He was like I don't know.

Very annoyed I took another appointment tomorrow with another cardiologist.

Oh dear, that wasn’t helpful at all! Pretty dismissive…😠
For this next specialist appointment, write down everything you want to tell them, all of your symptoms, when it feels the worst and the best and anything that seems to happen right before you get the worsening symptoms.

Did you ever wear a Holter monitor for a period of time? I think you mentioned you had a while ago. But anything more recent?

Hi @loribmt !

I hope you are doing fine <3

I went to another cardiologist yesterday...Basically told me that they did everything they could do at the hospital in CA (7 days monitoring Holter, CT scan, Ultrasound with effort). He said that he is not able to explain the tachycardia and that the low blood pressure after sport is not a problem. He said I have probably a very severe Posttraumatic disorder and that I should take a week off work and do sport and that I should take the ativan if I feel anxious that my heart beat fast. He said I should not go to any other specialist right now and just calm down. I am quite pissed off.

I have been reading about dysautonomia and I feel that it could potentially be some sort of autoimmune affecting my nervous system and therefore my heart? I don't know to be honest...Maybe its worth trying some medication? "Treatments include: Tricyclic antidepressants such as Elavil, Norpramin, and Pamelor have been used, in low dosage, to treat several of the dysautonomia syndromes. Selective serotonin reuptake inhibitors (SSRIs) such as Prozac, Zoloft, and Paxil have also been used to treat these syndromes."

I am a bit lost with all of it... and not really sure what to do...On Friday I am going to my infectiologist and monday on my immunologist so I am hoping to get some of their answers? 🙁

Hi Maria, oh golly, I can feel your disappointment and frustration. Being essentially told it’s anxiety when you’re obviously having symptoms that are alarming is awful. You’re not along in this as there are a number of members who share similar experiences on their quest for answers.

When you mentioned dysautonomia, I found several discussions in the forum you might be interested in reading. Some are old but they follow in chronological order and you can start with the most recent by clicking that option in the menu under the heading.

I’m on the road today so I’ll be off-grid for several hours but wanted to get you this information to start with. I really hope your other doctors on Friday and Monday help give you some clarity and aren’t so dismissive. I feel so sad you’re going through this! Wish I could reach through the computer to give you a big hug… 😕

-Treatment options for Dysautonomia
https://connect.mayoclinic.org/discussion/in-2011-i-was-diagnosed-with-dysautonomia-it-is-not-pots-but/
-I'm having multiple odd episodes that are keeping me undiagnosed. Help
https://connect.mayoclinic.org/discussion/im-having-multiple-odd-episodes-that-are-keeping-me-undiagnosed-help/
See if any of these conversations sound familiar to you and feel free to pop into those chats!!

Hi @loribmt ! I hope you had a nice roadtrip? Where did you go? How are you?

I have been through the discussion, thanks a lot! It's similar to me but also different in some ways.

I have been to my infectiologist on Friday, she spoke to me for one hour and told me that I should not let anyone dismiss me and that my symptoms are psycho-somatic - She thinks it's all linked together. She was very serious about my case and told me that most likely indeed my problem does not come from my heart and that she would do the following :

-Put me in a rare disease program where more than 20 specialists go and talk about some specific cases. She said that if my immunologist does not want to do it, she will make my application.
-There is one of the best immunologists here that she knows who is coming back from the US, in two weeks so she would ask him to see my whole case. Based on his recommendation we could try medications / or do an additional test.
-We're waiting for the Full Genome Sequencing

On Monday, after my appointment with my immunologist I have to write you on the update on the genome sequencing as well as the research program.

In the meantime I am thinking to take this medication? maybe it would help? https://vicnic.com/products/tromcardin-complex-tablets-120-pcs#:~:text=Tromcardin%20complex%20is%20a%20dietary,as%20niacin%20and%20coenzyme%20Q10.

I am still having chest pressure that goes up to almost my shoulder and feeling like my heart is not beating then beating fast and I feel very unwell. I have been sleeping so much. I am also doing the AIP diet and taking SEED probiotics since Monday but as of now, I have not seen any changes...I feel like my throat, stomach and salivary gland issues have been even more intense, so I do not know what to think.

I have a cardiologist next week, a neurologist in 3 weeks, and a psychotherapist in 3 weeks so I think there is no arm to have some opinion from the same hospital and maybe get some anti-depressant support because Ativan is not healthy. I am currently taking 1 Ativan per day and I am freaking out that without it I can't function.

Hi Maria! Wow, I’m really liking your doctor and so relieved for you that she is taking this seriously! It just seems to make sense that this is all connected somehow. It must feel good to have her believe you! It’s so hurtful to be told your symptoms are psychosomatic. Bless this doctor for continuing to pursue this case to find answers for you! 😍
It’s impressive that she’s enrolling you in the rare disease program! I sure hope the specialists can work some magic to pinpoint the cause of your medical mystery!

About the over the counter drug you found, I’m not sure you should be taking anything at this time without the advice or OK from you doctor. Tossing too many new variables into the mix at this time isn’t a good idea. With your bloodwork, I’m sure you’ve had your magnesium and potassium checked. As long as the readings were in the normal range, taking more of those two supplements, which are the main components of this product, might not be the best idea for you. That can shift the balance in the opposite direction. If this was a matter imbalanced electrolytes your doctors would have had you on supplements already. The other ingredients of Vitamin b 12 and folate are readily found in a healthy diet.

~https://www.health.harvard.edu/staying-healthy/the-a-list-for-vitamin-b-12-sources

~https://www.bodybuilding.com/fun/6-foods-packed-with-folate-and-b-12#:~:text=Folate%20is%20a%20water-soluble%20vitamin%20that%20leaches%20out,wheat%20germ%2C%20quinoa%2C%20sunflower%20seeds%2C%20hazelnuts.%20Vitamin%20B-12

I would stay the course with the Auto Immune Protocol diet. It might be too soon to notice any changes. But it’s a healthy diet and it won’t harm you…so that’s all good!
The probiotics are generally a good idea too, however if you feel you’re getting a lot of gas from daily use, cut back a little.
Try not to freak out about the Ativan. You’re on a low dosage and should be able to gradually make a switch to another type of anti-depressant once you speak to the physiotherapist. Right now the Ativan is doing its job and helping you over the worst of your symptoms. I had to rely on Ativan and 2 other meds for nausea during my chemo. I didn’t like having to take it but it was a means to an end…we do what’s necessary at the time. You’re going to get through this! ☺️
I’ll look forward to what you’ve learned from the genome sequencing!
You’re in good hands there, Maria. Try to focus on those little things that bring daily joy. Huge hug!! 💕