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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 ! 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.
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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!! 💕