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BSB721
Posts: 9
Joined: Mar 2019

I’m wondering where I should go from here. Just an FYI-my sibling died at age 37 of NHL. 

 

Almost 4 weeks ago, before my 39th birthday, I started getting these weird chest pains. I took myself to the ER for it, as it was burning and alternating sides. I’m female, and thought I was having heart attack symptoms. Then, it started moving up the right side of

My neck and causing a little jaw numbness. Ekg was normal, chest X-ray was negative (so they say), CBC was normal. The next day I felt like I was hit by a truck with exhaustion and fell asleep for hours. I also had shortness of breath, extreme intolerance to cold, and numbness in my fingers. I did have chills throughout the day. I also found a swollen lymph node in my groin at this time that I realized had kind of been there awhile.

 

 

Fast forward to almost 4 weeks later, I still have all these symptoms to varying degrees. The most bothersome is the intolerance to cold. I wake up in the middle of the night cold and clammy and for the first time, yesterday I had a straight up hot flash in the midst of being freezing. i also have very mild stomach itching. I’ve almost been totally cleared by a cardiologist. He’s seen me and I’ve had a stress test. I’m just waiting on an echo this week. I had an ultrasound on the lymph node in my groin this morning and the tech said that of course she can’t give me details, but she found 4 enlarged inguinal nodes-2 on each side. They measured 2cm, 1.6cm, and the others were over a cm. I had my GP order the test. I have a great cancer center here but they won’t take me until I have a doctor’s referral with some kind of suspicious scan. So, if tomorrow, my GP says “you’re good, don’t worry” I really don’t think I’ll feel comfortable at that point. What would your next step be? Find a hematologist? im Sure this sounds like lymphoma. Thanks so much! 

po18guy
Posts: 1009
Joined: Nov 2011

It does not strike me as lymphoma. Any lymphoma that was so advanced and so widespread as to produce such wide-ranging and profound symptoms would very possibly have you in the hospital. It sounds like something else is going on, but allow doctor to trace it down - if possible. Bear in mind that there aare thousands of unknown conditions which produce varying symptoms are are never identified. I am in that position right now.

BSB721
Posts: 9
Joined: Mar 2019

Thank you so much for taking the time to read, and for the reply. You mentioned you are going through some things to which you don’t have answers. Here’s wishing you find some Very soon!

po18guy
Posts: 1009
Joined: Nov 2011

My journey is unusual, to say the least. One aggressive T-Cell NHL three times, one other aggressive T-Cell NHL once and Myelodysplastic Syndrome (Leukemia precursor) in my marrow. All three simultaneously in 2015. Lymphoma cannot hide. In rare instances, it is confined to the marrow and thus does not show clearly (or at all) on CT scans. A PET will find it, but only if a PET is done.

Your situation sounds potentially autoimmune, endocrine-related, viral or possibly some combination. There are many conditions which are never diagnosed and when they resolve on their own, doctors are greatly relieved. Most likely, the cause of your malaise will eventually be found. Best to persevere with doctor while keeping busy with life and not allowing it to dominate your thoughts.

In worrying about the future, we often sacrifice today - and that is all we possess.

BSB721
Posts: 9
Joined: Mar 2019

Wow. I am so sorry. That sounds like 2 lifetimes of issues and worry crammed into a little amount of time. You are so right ablut worrying. I need to be better about that. 

po18guy
Posts: 1009
Joined: Nov 2011

For worriers. Get a spiral notebook and write your worries in it as they occur to you. Weekly, or semi-weekly, go back through them and cross off those which did not come to pass. I'll bet that you cross all or nearely all of them them off. This gives you a sense of perspective regarding worry as well as closure and some empowerment over your worries. Any worries that did occur were probablty not nearly as serious as imagined.

BSB721
Posts: 9
Joined: Mar 2019

THAT is a great idea. I’ve used other techniques, but never that one. I’m 100% going to do this. Thank you! 

Evarista
Posts: 266
Joined: May 2017

This is my non-medical opionion:  My next step would be a chat with my gynecologist.  Hot flashes/chills/inguinal nodes speak to me more of things pelvic than things blood and/or lymph-related.  I do wonder what your GP had to say, but I recall that 30 years ago, my female things were not behaving.  GP had no thoughts on it; Gyn ran a thyroid test and bingo.  Turns out that thyroid issues can affect menstrual issues because hormones work systemically.  Likewise, something as simple as a benign ovarian cyst can cause a lot of symptoms. So, if I hadn't had a pelvic exam in a while and I had the symptoms that you are describing, I'd check in with my Gyn. I'd also want a repeat CBC with differential.

I do hope that the sono checked your ovaries...How did it go with the GP Monday?

BSB721
Posts: 9
Joined: Mar 2019

I Thank you so much for your response. I have been thinking GYN issues, too. i had an ultrasound , which showed 4 enlarged lymph nodes above 1 cm, one of them was 2.2cm. Radiologist read them as reactive and benign. I’m not 100% sitting comfortable with that because I need to know WHY they are reactive, even if they are not malignant. I went to my GYN a few months ago because I was having to urinate all the time. No UTI, he did an ultrasound on my ovaries and they looked good. That issue comes and goes  about every 6 weeks. I’ve had my thyroid tested, two cbc’s with differential, and I’m waiting on rheumatological bloodwork. Ugh! Also, I’m now having some facial numbness. 

BSB721
Posts: 9
Joined: Mar 2019

I Thank you so much for your response. I have been thinking GYN issues, too. i had an ultrasound , which showed 4 enlarged lymph nodes above 1 cm, one of them was 2.2cm. Radiologist read them as reactive and benign. I’m not 100% sitting comfortable with that because I need to know WHY they are reactive, even if they are not malignant. I went to my GYN a few months ago because I was having to urinate all the time. No UTI, he did an ultrasound on my ovaries and they looked good. That issue comes and goes  about every 6 weeks. I’ve had my thyroid tested, two cbc’s with differential, and I’m waiting on rheumatological bloodwork. Ugh! Also, I’m now having some facial numbness. 

BSB721
Posts: 9
Joined: Mar 2019

FYI The lymph nodes are inguinal. I thought I wrote that. 

Evarista
Posts: 266
Joined: May 2017

I understood that. My comments were based on my impression (perhaps incorrect) that there is some pelvic/addominal drainage to inguinal nodes. Hopefully you get some answers soon.  

BSB721
Posts: 9
Joined: Mar 2019

I just wanted to make sure I didn’t leave that out because I know inguinal nodes can be bigger than others and still be “ok.” I’m going to follow up with a gynecological urologist. I’ve been having some urinary urgency, so it’s probably a good idea. Hopefully they will be willing to take a peek at my ultrasound as well. Maybe that’s why they are englarged.

po18guy
Posts: 1009
Joined: Nov 2011

Based on the symptoms and location. Our inguinal (pelvic/groin) nodes are larger by design, as we seem to have more infections there and the capactiy to fight infection must follow.

BSB721
Posts: 9
Joined: Mar 2019

Thank you! I’m okay with those results. I have no explanation for this chest pain, though. It’s been 5 weeks. I’m going to push for a chest ct.

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