Years of Doctor visits, tests, and no results. Extremely worried.

[tyler550]

Hello all!

I have been a member of this forum for years, however i forgot my old login info which is upsetting because if you were interested in my previous posts, you'd be able to look but now they're lost.

Like all of you, i'll try my absolute best to keep this as short as possible while listing everything I've gone through. If you're busy, this might not be the read for you, but I still very much appreciate you clicking!

I have health anxiety, I know this because I was worried about diseases that seem wildly unlikely and silly. I believed I had rabies, ALS, MLS, all the big ones at the ripe age of 19-22. I went to the ER multiple times because of these fears. I have however, gotten extremely better with my health anxiety and knowing when something is actually wrong with me vs me having a panic attack.

That being said, I've had a problem that has lasted for years which in my opinion, is cause for concern. Around the age of 20 (I am now a 24, Male) I noticed two swollen lymph nodes behind my neck by the shoulder blades. I didn't think much of it and brushed it off. A few months later I noticed more lymph nodes swollen on my neck, armpit, groin, etc. I decided to make an appointment to the doctor to get it checked out.

The last 6 year I have delt with intense random spurts of chest pain, shortness of breathe, sometimes feeling like I have trouble swallowing, increased heart rate, all the symptoms that seem like it's a heart disease. I mentioned that to the Doctor and he suggested I have a needle biopsy. You don't cut the lymph node out but instead use a needle to suck some of it out to study under a microscope. I wanted them to cut it out but at the same time I was also scared of it so I agreed. The biopsy was successful and the results came back as 'unconclusive'. After this I looked up and realized the needle biopsy is very iffy in terms of accuracy. I mentioned that to him and he said what we can do it monitor it every so many months to see if the size changes, if more pop up, etc. I was given a CT scan of my chest due to my chest pain and he came back and said "you had a lot of lymph nodes swollen in your chest". I asked if it was cause for concern and what it could be and he basically gave me no answer. Every 6 months I would come back for an ultra sound of 4 of my swollen lymph nodes. They all came back fine and I did this for 2.5 years. Around 8 months ago I noticed that two of them got noticeably bigger, and they hurt. When I drank alcohol they hurt even more too. I was in Florida for a month during this time and I live in Illinois so I called my doctor and mentioned it and said he'd see me when I get back. The entire trip was ruined because I kept panicking about my lymph nodes and the constant pain it brought me. However like I said I know I had Health Anxiety and noticed that my constant thinking of it might be contributing to the pain/stress.

I get back and they send me to a specialist (basically because I begged). I saw a Hematologist a week later (someone who specializes in blood and lymph node cancer/leukemia). I took a lot of blood tests before seeing him just so he had them once I got there. The Hematologist talked to the doctor before hand to order the tests he wanted. When I get there, I met probably one of the most concerning and well educated and thoughtful doctors I've ever talked to. He spent about an hour just talking to me and going over things which seemed unreal seeing as how hectic hospitals are right now and with the short staffs. He basically said he's been doing this for a long time, and none of my lymph nodes or tests seem like it would be anything awful like Cancer, Leukemia, etc. I told him what I should do and he said basically nothing. That sometimes people have swollen lymph nodes for years with no explanation. The talk with the Hematologist was around 2 months ago. Lymph nodes still swollen but rarely pain, if there is pain it's usually by the groin lymph nodes.

This is a very confusing story and I'm telling it in this order because I hope it'll make more sense this way. 4 Years ago I saw a cardiologist due to my intense chest pain and fainting spells. Whenever I worked out or sometimes after a long session of sex, I would almost and sometimes pass out and my chest would feel like someway was trying to punch my heart out, all the while I'm nauseous, short of breathe, and sometimes I would actually throw up afterwards. I had a lot of tests done, the main one being a echocardiogram/stress test. I did this and it came back normal. The Cardiologist said he noticed noting abnormal about my heart, and that it might be Asthma. I was given an inhaler but never used it. I know I'm going to get backlash for that and I should. I am just terrified of taking medicine I've never used before. The ONLY medicine I'll take is Tylenol.

Two years go by and I'm still having these heart problems after exertion. I was given a monitor I wore for almost two weeks and that came back normal as well. I feel like I didn't have the chest problems when wearing the monitor which to me seems like it was Health anxiety. Me wearing that monitor made me feel more comfortable to have those chest and faint episodes but I almost never did when wearing it. A few months go by and I receive another stress test and echocardiogram and that came back normal again. I decided it was me thinking this all and gave up.

During the last year of my life I have had worse and worse chest pain, it's now happening more and more, and it's happening more without having exertion, which seems weird to me. I am nauseous all the time, intense stabbing chest pain that comes and goes throughout the day. I'm starting to think all of my symptoms might be linked together, or I still have Health Anxiety and it's gotten so bad I can't even recognize it anymore. On top of it I randomly spit up blood every so many days. Sometimes it's multiple days in a row, or sometimes I'll go a month or two without spitting any blood up. It seems like a lot.

I have all these bizarre symptoms that I feel like need an answer. Health anxiety doesn't cause someone to spit up blood (the blood spitting has been going on for 2-3ish years). As of now, I experience the following symptoms almost everyday.

• Sharp chest pain on left side, middle, and sometimes right.
• Shortness of breathe
• Blood in mucus
• Leg pain that started a few weeks ago (feels like bone pain)
• Swollen lymph nodes all over body
• Chronic headaches
  (I was in a bad car crash as a kid and i've had these ever since. I've had a MRI of my head 3 years ago and it looked normal to them)
• Nauseous
• Fainting spells if I work my body/heart too much
• Some nights can't sleep or wake up due to chest pain
• Intense side pain right under ribcage on both sides

I know this was a lot, and I could go into even more depth, but if you've read this far I just want you to know I appreciate you a lot. I usually try to read 1-2 posts a day on here and give some feedback and appreciate all the kind people who do the same for me. I just want this nonsense to be over. I also stress a lot because I'm a single father of an almost 4 year old daughter and I always worry what will happen if I die young. If you have any tips or opinions, please let me know!

Thank you so much.

Also, I went to the ER three nights ago due to the intense chest pain and they ran some tests and couldn't find anything. I'm not sure what blood tests they ran but I've heard about Pulmonary Embolisms being sneaky chest pain causes. Just wanted to mention this.

[.Poppy.]

I’m sorry you’re struggling, this sounds like a lot to take on. It does sound like you have been under the care of many doctors who aren’t especially concerned. I wonder, what have you done to try and tackle the anxiety?

I had a swollen lymph node in my jaw for years and another behind my ear. I remember having them when I was young, and when I was in middle school (and later high school, when my HA kicked off) I was just sure it was cancer. I didn’t end up going to the doctor until I was in college and noticed another one. He did bloods but wasn’t at all concerned. Now? The one behind my ear is still there but the others are gone. Lymph nodes can just be weird. And honestly it would be pretty surprising for you to have lymphoma or something cancer related that has gone untreated and still be here.

For the chest pain, have you ever looked up costochondritis? I get flares of this on both sides and even in my back. It’s awful, but harmless. Anxiety seems to really kick it off, unfortunately. But hot compresses and pain meds do help.

I hope others can chime in and be more helpful and that you feel better soon.

[ErinKC]

I'm sorry you've been through all this. The chest pain/symptoms are so tricky because all of those symptoms can be symptoms of anxiety. With all the tests you've had done, this really seems to be the case. I wonder also if some of it could be GERD or reflux. Even if you don't have obvious symptoms, something you can have silent reflux where you don't feel the heartburn but you get some of the other symptoms. A few months back I was having really bad palpitations. I get them sometimes so generally don't worry, but this time they were unrelenting. I called my doctor the next day and she brought me in for an EKG. I felt the fluttering during the test but none of it registered on the EKG, which was completely normal. I realized it was likely a bubbling sensation from reflux.

Reflux can also cause nauseous and I wonder if it could cause the blood in your mucus from irritating your esophagus. You say you're "spitting up" blood, not coughing it up - could the blood be coming not from your lungs but from your mouth/sinuses/throat?

And finally - I agree with Poppy. If you're really focused on your breathing you can cause a lot of muscle pain around your chest and it takes a good long time to resolve. The deep breaths and over-focus will keep perpetuating it.

If this was me, the hematologist plus the two times of heart monitoring would have put my mind a ease. I know it's hard when your body is doing weird things, but bodies do weird things something! It's been so many years now that if you had something truly sinister it would have progressed and made itself obvious.

[nomorepanic]

We can easily find your old login name - just PM me with the email address you used.

[tyler550]

Hey!

I have tried a few medications for anxiety, however after trying each one for at least 6 months, I realized I was much better off them than on. Once I leaned off them I felt so much better. I've tried therapy with two different therapists, each around 9 months, and that didn't do me any good. What helps me is just myself consistently reminding myself that it's all in my head, taking a few minutes a day just to sit in silence and think about why I assume I have what I have. In my personal experience, any type of anxiety comes down to you and your mind, and you need to get a hold of it. I just think I've been letting it slip recently due to these severe pains I've been getting.

Coming on here and answering and reading other people's posts helps me out a lot, as I feel like I can relate to almost everyone here and vise versa, and just knowing that I'm not alone.

I have heard of costochondritis, but the one thing about me is that I WANT a doctor to tell me I have something with actual proof/evidence, and that condition is just kind of a guess after ruling out all of the more severe options. That's part of my problem, is that I want tests to 100% confirm I have something, as I've seen/read a lot of doctors misdiagnosing or treating someone because of a 'estimated guess' and that scares me.

I think if I had every test done in the book it'd make me feel better, however I know that's extremely risky, costly, and not worth it. Knowing that, that also helps me stay grounded and keep my mind at peace. Sometimes it's better not to know everything.

Thank you for reading and responding to my post, Poppy! I hope you have a great week

[tyler550]

Funny enough, my last ER visit (a few days ago) the doctor suggested just that. My primary doctor has mentioned it, but we haven't really done any tests or tried any medication for it due to us wanting to make sure it's not something more severe than that as he knows I also struggle with on/off Health Anxiety.

My best friend has really bad GERD, and tells me he gets some of the same symptoms, but he never spits up bloody mucus like I do, which made me skeptical thinking I had something more serious like PE, or even worse a type of cancer.

I actually get bloody noses almost every other day during the winter, so doctors suggested it could be from that, but I haven't gotten a bloody nose in a few months and still catch myself spitting up mucus with blood in it. I am not coughing and then dry blood comes up. I simply have saliva in my mouth and have to spit and poof, there's blood in it. They might put a tube down my throat to look but I haven't done it yet as I don't want the test if I might be overreacting again, I don't want my Health Anxiety to win.

Thank you for reading my post and taking the time to respond Erin! I hope you have an amazing week!