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Lots of Symptoms Yet No Answers

TiredOfBeingAMystery's picture
TiredOfBeingAMystery
Posts: 3
Joined: Mar 2015

First off, I have not been diagnosed with any form of cancer or anything to be quite honest but my symptoms seem to point in the direction of some form lymphoma. I have been to see my regular doctor who sends me to specialists who perform countless tests over the last 3 years with small abnormalities but not enough to cause them alarm.

The first thing that caused me to see my doctor 3 years ago was an odd lump that I felt just above my left breast. I was sent for an ultrasound and told that it was a swollen lymph node and I should return if it does not go away. It has not gone away. The next thing that sent me to my doctor was that I had a difficult time breathing. I felt like I had an elephant sitting on my chest and I was tired all the time. I thought maybe I developed asthma like most of my family. An Xray showed "something" and I was sent to get a CT scan which showed nothing to be alarmed of. My doctor noticed swollen lymph nodes on the left side of my neck that I hadnt noticed and he sent me to an ENT. The ENT looked at my thyroid and declared that I had a nodule in the right side of my thyroid and found more swollen lymph nodes. He checked the size of the thyroid nodule and said that it didn't look too scary so I was told to come back if the lymph nodes have not returned to normal size. I began to sweat so much at random times during the day even when I was shivering from the cold. I developed heart PVC's 1 year ago which caused me to be taken by EMT's to the hospital from work where it was declared that my heart kept trying to create an extra beat causing my heart to feel as though it was being thrown against the inside of my ribcage which took my breath away. I was sent for stress tests, an EKG and more chest scans but no definate cause could be found. I got tired of dealing with all of the symptoms that the doctors could see but not explain so I stopped going to the doctor. I started having some extreme pain under my left shoulder blade into my shoulder joint that extended to my clavicle and into my chest all on the left side. I thought that I had just slept wrong or pulled a muscle so I tried to deal with the pain. I went to my chiropractor who was shocked to find that my clavicle had been displaced without any known injury. He noticed that I have swelling that extends from my underarm to above my clavicle bone. He said that the swelling is what caused my bone to be displaced. He set it back into place and I thought that would have remedied the pain. It did not. A few weeks ago I got very very ill after my four kids came down with a 48 hour cold. I thought I had gotten the same virus and expected to be well and ready to return to work after 48 hours. After 2 weeks of drenching sweats at all hours of the day, sleeping almost constantly and chills I went to the doctor. After many blood tests it was established that I had contracted mono, which was odd since I had not swapped saliva with anyone in the last 6 months other than my kids sneaking sips of my soda. He told me that he thinks that there is something else going on and that is why the mono set in so intensly so quickly. I was put on a 6 day steroid routine which had helped me be more productive as a single parent, relieved some of the fatigue of the mono and shrunk some of the swelling in the left side of my neck. A few hours after the last dose of steroids, the pressure and uncomfortable pain in my left shoulder blade, clavicle and neck has returned. In the course of 3 years the lymph nodes continue to get bigger and cause more pressure in my neck. After each visit to my doctor and specialists, I leave feeling like they are missing something and that something is wrong. I don't know what or how serious but I know something is causing this.

I suppose the biggest question in my mind is whether or not I am crazy and overthinking all of this. The symptoms are tolerable but are getting unbearably annoying. I would just like answers so I can learn to adapt and deal with it. The word 'lymphoma' keeps coming to mind no matter how many times I push it out. Am I asking the wrong questions that are keeping the doctors from figuring out what is wrong?

Anonymous user (not verified)

Your story is not unusual. I would recommend going to a cancer specialist, sooner not later. Its probably not cancer but you need to know. Good luck!

TiredOfBeingAMystery's picture
TiredOfBeingAMystery
Posts: 3
Joined: Mar 2015

Thank you for your reply and suggestion!

Max Former Hodg...
Posts: 3705
Joined: May 2012

You are asking the correct questions, Tired. You are just not getting answers from your doctors yet.  Your concern is totally reasonable. To not be concerned given your recent medical history would be unreasonable, in fact.

My guess is that most people with your symptoms would have seen an oncologist before now. I would have.

I was crushed in an auto accident in 1986. During 25 days in ICU, I received 22 pints (over three GALLONS) of blood, partly due to the seven surgeries I had during those weeks.  A few months later, when seeing my family doctor, I asked if he thought I should get an AIDS (HIV) test, since AIDS was relatively new at that time, and the blood suppply had just started manditory testing in the US a few months before my wreck. (Universal, manditory testing of the US blood supply began in around May of 1986; some blood centers and suppliers began testing before then.)

I was hoping the doctor would dismiss my concern, and blow it off, and say something like "Naw, no reason to test. The blood is safe now."

Instead, he immediately said, "Yes, I would recommend that you be tested for HIV right away; it is inexpensive, and it will rule it out."

Damn ! I was disappointed in that response !  But I was tested, and it was negative, thanks be to God.

A second experience I had in 2009: I had experienced serious chest pain, and a cardiologist, who initially thought that I had angina, had a stress test with imaging done. He discovered that I had no heart problems, except huge nodes pressing against the wall of the heart.  He referred me to my new family doc, and he immediately ordered a chest CT, saying "Enlarged nodes can never be ignored."   I have always been so struck at my doctor's immediate sense of urgency, verses the way that many other people's doctors seem very able and willing to ignore or dismiss things.  I prefer doctors like mine.

Your question sounds (to me) a little bit like my question regarding HIV which I posed to my doctor in 1987.

My experience #3:  urinary trac problems most men my age develop, which kept getting worse, along with rising PSA lab results. These symptoms could have been something called "Enlarged Prostate," or they could be prostate cancer. A doctor told me he would more-or-less ignore it, since the symptoms were not severe.  Instead, I had a biopsy, and in February had my cancerous prostate removed.

Testing in your case is justified. I know, three times.

max

TiredOfBeingAMystery's picture
TiredOfBeingAMystery
Posts: 3
Joined: Mar 2015

Thank you for your reply! I'm glad that you were able to get answers! It is a very frustrating and scary thing to know something is not right and having doctors give off the sense of urgency then have to walk away with few to no answers. It seems that the only tests that I have not yet had are a biopsy and a mammogram. I don't want to come off as if I am searching for something to be wrong, all I am searching for is an answer. Whether it is a simple remedy for a simple issue or something more. I would just like to find a remedy and get on the right track to taking care of the issue not only for my sake but also for my four kids. I am due to go back to my doctor if the lymph nodes are not smaller in size in a months time or sooner if I have any new symptoms or returning symptoms, such as a fever or my left tonsil getting any larger than it already is considering I have just completed the round of steroids. Hoping for any answers at all.

Elizabeth400
Posts: 5
Joined: May 2015

Hi there

 

habe you had any answers yet? Please let us know. 

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