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throwaway12312313
09-04-18, 21:23
Hello all, I hope some people can take the time to listen to my story, as I am in a very dark place and feel the need to reach out.

I am a 28 year old male who has been at the pinnacle of health up until December, at which point my life fell apart.

I'm having severe health anxiety as a result of one thing after another going wrong for the last 4-5 months. Please bear with me since the timelines of all these ailments jump around a bit.

It all started in early December when I got sick with something. Girlfriend was sick too, so it was likely contagious but it was mild. Some lymph nodes in chin and right lymph node in groin swelled, caused discomfort. Lymph nodes in chin subsided, the one in my right groin remained around 1.2 cm, and sometimes I can still feel soreness in the area.

Around the same time in december/january, I started getting severe constipation for a while and noticed blood in my stool. This also came with lots of abdominal pain and discomfort. This led me to start worrying that I had colon cancer.

I had a sigmoidoscopy done in january that found some minor hemmhroids that the doctor said may have caused the bleeding. Later (feb 20) I had a full colonoscopy because I was still having the issues. The doctor took a random biopsy which said "mild stromal fibrosis" and said that "small lymphoid aggregates" were present. I also had an upper endoscopy (march 1) which found erosive gastritis on the top part of my stomach. Random biopsies from the stomach found various minor inflammation, but "small lymphoid aggregates" from one of the duodenum samples caught my eye. At this point I started obsessing over lymphoma.

Over these few months, I also had a TON of blood tests (probably had every kind of blood test possible), you should see my arms, they are still full of needle marks. All came back normal., I had an ultrasound of my groin lymph nodes (1.0 x 0.8 x 0.3 cm on left side, 1.2 x 0.3 x 1.0 on right side), and a clear chest X-ray and abdominal ultrasound. Eventually, in march, I had a abdominal MRI with contrast (clear). I also had a pelvic MRI with contrast that found an extremely rare abnormality called a "urethral diverticulum" which is very uncommon in men. This alone freaked me out and I spoke to a few doctors about it who said not to do anything since I was probably born with it. I still worry that the radiologist misdiagnosed it and its actually a cancerous tumor, but the doctors do not want to do surgery. I also saw a hematologist/oncologist who took a bunch of specialized blood tests (normal) and got mad at me when I came back again with lymph node paranoia.

I also felt some lymph nodes in my neck and ended up in the ER with a severe panic attack over it (early march). They did a CT scan of my neck and found "multiple level I and II sub-centimeter lymph nodes" but they said they were normal and sent me away. I think since then they have gotten a bit larger and I am constantly obsessively feeling them. I can feel 4 in the area under my chin. I think at least one may be over 1cm now and it's freaking me out a lot. I'm touching them obsessively every 5 minutes.

In the midst of all this, at the end of january, I found a small lump around my left bicep that was misdiagnosed as 5 different things by 5 different doctors. First one said lipoma. Next one said cyst. Did an ultrasound, they said it was either cyst or lymph node. Eventually saw surgeon who said it was either a calcified tendon or cyst. I eventually convinced the surgeon to cut it out (this was last friday, still waiting for biopsy result, severe anxiety). The billing code from the hospital said the surgery was to remove a "mass of the peripheral nerve of upper extremity" which nobody mentioned or explained to me.

Also in January I saw a neurologist because I thought I had MS and he did a ton of neurological testing on me that came back normal and sent me home with a prescription for ativan, which doesn't even do anything for me anymore.

Over the last ~3 weeks I have been having bloody boogers / see some blood when I blow my nose and it is further increasing my panic. One thing after another. And every little pain or weird observation throws me into a panic. I'm still having abdominal trouble.

Believe it or not, this is the abbreviated history. I've also had/have other weird symptoms like a weird click/muscle spasm in my neck when I swallow, some pain in my leg, some pain in my armpits though I havent felt any lymph nodes there, and a lot more things I probably cant even remember/keep track of right now. At one point I lost like 10lb, prompting a doctor to prescribe me megace which helped me gain it back. A few times I woke up and I think I had night sweats, but not severe, sometimes only my legs. Everything tells me "cancer".

I have seen 20+ doctors, I have had a huge amount of blood and imaging tests. The surgeon refuses to biopsy any of my lymph nodes, and I have told multiple doctors I wanted to biopsy them and I keep being told no.

At this point I am convinced I have some sort of cancer and it is driving me insane. It has gotten to the point of considering suicide. It has ruined my life, jeopardizing my relationship and my career. I feel like I am seriously sick and all the doctors are either incompetent or are looking in the wrong places, and the scans were either too early or misinterpreted. I wake up 5x times a night paranoid. Is it possible to have this kind of streak of bad luck and scary symptoms without it being related to each other? I'm having trouble believing in this kind of insane coincidence streak.

I am working with a therapist and psychiatrist but the pills I have tried do not work and the ones that worked even a little tiny bit (ativan), I have grown a tolerance to. Besides, these pills do not stop the physical symptoms from existing and I am losing my mind.

I am ashamed to even go to my doctors anymore because I keep coming back with new things and they are all getting pissed off. Everybody is dismissing me. I have done almost every test possible and I can't keep asking for repeat MRI/CT scans. I am running out of things I can do.

I don't know if I'm really dying from cancer or just paranoid. Everything is a mess. I need help.

PS:
I am not a crazy person. I am usually very rational and I am (supposed to be) defending my PhD dissertation soon. I am not delusional, and I do not think that blood and lumps can be psychosomatic. I have been having a streak of real physical issues that have left me worn out physically and mentally to the point that it is unbearable. I no longer know where to turn.

PS #2:
Forgot to mention, my girlfriend was diagnosed with HPV type 16 about 1.5 years ago, so I probably have that too. I know it causes a ton of cancers so that hasn't been helping.

AMomentofClarity
09-04-18, 21:35
Maybe it’s not what you want to hear, but it sounds like you’re spiraling mentally. You’re not able to think clearly and you’re catastrophzing everything. You’re trying to connect dots (symptoms) that don’t even exist.
There’s no way that amount of testing could leave a Cancer undiagnosed, especially one advanced enough to be so symptomatic.

You need to focus your energy in the mental health treatment. If one medication isn’t working, ask to try another. Be willing to stick with it through the initial ramp period, which can be hell. The sooner you acknowledge the anxiety causes of your symptoms, the sooner you can treat the root cause.

Scass
09-04-18, 21:43
Phew, that made me anxious just reading it. You have seen a ton of doctors and had so many tests done! You’re really very physically healthy [emoji4]. Now, who have you spoken to about your mental health and anxiety? I really think THAT should be your next doctor appointment. You should probably make it soon too. Show them your post if you don’t quite know what to say.

Also, start doing some progressive muscle relaxation. Some gentle exercise, walking etc.
Let us know how you get on [emoji4]


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Emc
09-04-18, 22:32
Goodness that’s a lot of investigations! Ok you have had second & third & fourth opinions at this stage & nothing sinister has been found. It is incredibly unlikely that in alll of those investigations something significant has been missed.
This all sounds like severe health anxiety to me and very little else.

throwaway12312313
10-04-18, 01:50
Thank you everybody for answering and thank you for your reassurance.

I know I had a lot of tests and I have seen a lot of doctors, and rationally I should be reassured, but I can't help but feel like they either missed something, misdiagnosed something, or I just got the scans too early or in the wrong place. Plus new symptoms or "symptoms" constantly showing up.
I also know the the only way to 100% rule out lymphoma is to do lymph node biopsies, and I haven't been able to get that done since all doctors don't want to do it. I think the lymph nodes have increased in size since I had my neck CT scan and at no point did I have any kind of cold or infection.

I am definitely spiraling and I am having some pretty horrible thoughts... If this is what health anxiety can do then it is a monster of a sickness. My life is effectively ruined and I am grasping for a way out or a way back to the person I used to be. I'm really afraid that I won't be able to get there :(

Scass
10-04-18, 21:10
So are you going to visit your doctor about your anxiety?


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throwaway12312313
10-04-18, 22:31
So are you going to visit your doctor about your anxiety?


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I have been. I am seeing my psychologist and psychiatrist every week, but the things we have tried so far do not work.

Today I got back the biopsy results from my arm/bicep area. Turns out every doctor was wrong and it was a lymph node. Biopsy said no cancer in it, but I do not believe this. False negatives happen all the time, and maybe the lymph node was too small. The fact that I've had lymph node problems for months now, including this one that was in a very strange place, And including lymphoid aggregates in colon and stomach tissue, has me 99% convinced I have lymphoma. The lymph nodes under my neck have grown in the last month and I think some of them may be over 1cm. I had no infections. I think this can only be lymphoma.

I plan to send the biopsy slides to Sloan Kettering for a second analysis, but I haven't been able to convince doctors to biopsy the lymph nodes in my neck and groin. I feel like they are signing my death warrant by not letting me do this.

I did a lot of reading, and with lymph nodes on both sides of the diaphragm it would mean the lymphoma is stage 3 or probably 4 since there is organ involvement. I can't put myself through that. Id rather commit suicide if this is really lymphoma. I don't know how to get the doctors to cut these things out of me. :(

I feel like I am staring death in the face. This is going to be the end of me. If the doctors listened to me in December or January maybe I would have hope, but now that it's stage 4 I really would rather die than face that. I am pretty desperate and not sure where to turn. If I go to the ER, they may do another ct scan but what I really need is biopsies right now :( After all these months I can't stand waiting any longer in limbo

Sparky16
10-04-18, 22:59
What was your gastroenterologist's explanation of the lymphoid aggregates? That seems to be where all this started.

throwaway12312313
10-04-18, 23:01
What was your gastroenterologist's explanation of the lymphoid aggregates? That seems to be where all this started.

He just shrugged and said "probably some irritation". I've also asked my hematologist-oncologist and she said it was "nonspecific". Basically dismissive non-answers from everyone.

My right inguinal lymph node was swollen before any of the abdominal symptoms/tests started.

Iwant2bhealthy
10-04-18, 23:21
The lymph nodes under my neck have grown in the last month and I think some of them may be over 1cm. I had no infections. I think this can only be lymphoma.

Sometimes an infection doesn't have to be visible to a clear eye. Our immune system fights external pathogens all the time, so I wouldn't necessarily connect lymph node changing size to cancer.

I support what the others said here. With this many tests, and doc appointments risk of you having cancer is really zero. Deep inside you know it too, but the health anxiety won't allow you to accept it.

You mentioned you tried theraphy, do you also take medication? Did you tell your current theraphist that the therapy doesn't work for you? I have been to a few theraphist before I found the one who trully helped me. She was also the first theraphist who specialised in panic disorder, OCD and anxiety. Maybe you should seek help from a theraphist with a similar profile?

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WHITEDETH
15-04-18, 03:30
Hey man i feel for ya. The more you focus the more you will make your symptoms appear or worsen. I gave myself awful lower back pains, fullness in the abdomen and being able to feel my abdominal pulse because i thought i had an anuerism. I have given myself painful bend over stomach cramps, narrow stools (somehow) and rectal pain from believing i had colon cancer etc. What you deacrisbed was real and genuine but now yoir mind has taken over and worsening and or creating symltoms. Hope you feel better soon mate this HA makes life hard work.

Pkstracy
15-04-18, 17:47
My advice look up cancer treatment centers for America, go to them don't go to regular doctors, have them run tests and such, they are specialized in cancers, but if you have been several times had all kinds of blood work done and ct scans and mris and they all came back normal, I would be like yay clean bill of health five times over, I know it's hard to do as I have severe anxiety and panic and depression it's hard to keep our mind focused when we are going through a health anxiety.

koolaidkitten
19-04-18, 16:58
Hey! I'm having some lymph node issues too and have (obsessively) researched them.


Firstly,

If they cut out a whole lymph node and a pathologist investigated it, I'd say that you should be in the clear. The "false negative" thing applies only to the biopsies done by the fine needle technique. Since the needle is so small the sample can be too small and since not trustable. But you had one cut out totally? That's my dream come true lol. But no one wants to do one to me. :(


Secondly,

In lymphomas the staging doesn't really mean the same as in other cancers. While in other cancers stage 4 could mean metastases in the brain and in the liver, in lymphomas it can simply mean that you have cancerous cells in both above and below the diagram. Lymphoma is not a death sentence – it is one of the most studied cancers and has some of the highest cure rates.


I hope you're doing well!

Pkstracy
05-02-22, 15:10
Came back to see how you are, and also the bloody boogers you are having with blood in your nose, could be due to dry air, dander, allegries, get a cool mist humidifier and run that when you sleep I have one and it's great.

AnxietySufferer
11-02-22, 18:22
I can feel 2 lymph nodes under my chin, 1 on the side of my neck and 2 further down. If you go looking for them anyone can find nodes. A doctor considered them englarged if they are more than 1cm in diameter NOT lenghth. Even then, they only advise to monitor them. If you poke them they will stay enlarged.

As other posts have pointed out. If you had a cancerous lymph node, it would be growing and you wouldnt have to question if it was there or not.

Multiple doctors have told you you are fine and are not concerned.

It sounds like you have a lot of stress with your PHD. I am studying too and when my general anxiety is bad, so is my health anxiety. It comes hand in hand and neither help the other.