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False-Negative? Other diseases like Lymphoma?

LeahStaub
Posts: 2
Joined: Sep 2017

There are several threads alive with fear...fear from people who have had swollen nodes and have been feeling sick for quite some time...I have noticed that these people sometimes don't ever update us on whether their fear was realized or if their biopsies came back negative. My hope is that they are still fighting the good fight as healthy people or that they are continuing their quest to discover what is truly going on with them.

 

My post is not much different than theirs. However, I do not know who else to talk to about this. It can be tricky trying to connect with friends when they no longer feel close to you. I have had to cancel so many times due to being ill or I'm simply too fatigued to go out. In addition, my thoughts often lead back to worrying about my health and that can be uncomfortable for some people to have to deal with constantly. I am also hoping - wishing - that maybe some particular fact about my story may remind someone of something they or someone else they know has been through. Maybe that person ultimately got a diagnosis and maybe you can mention to me what that diagnosis was. Any small detail may help me..so, please, if any of this rings true to you in ANY way (other than the obvious symptoms) PLEASE let me know. You never know...

 

For the last year and a half I have been getting frequent fevers, about every 3-4 weeks. In between those fevers I am feeling severely fatigued. Sometimes, it honestly feels like I have been drugged. I have been experiencing this strange twitching in my jaw which often goes down to my hands. The twitching has subsided recently with the help of a weaker anti-seizure drug called zonisamide. When this all began, I didn't think much of it so I didn't begin to see my doc about it until after about 7 months. I had swollen lymph nodes the entire time, but I kept pushing off going to the doctor. The nodes would change shape and size every now and then but would remain pretty consistently swollen. I started getting random infections that I never got before. I got TERRIBLE pink eye in both eyes to the point where they were swollen shut. It took months for my eyes to go back to normal; I had blurry vision for the longest time. I also got pnemonia (I'm 27 and basically good health) so I thought that was strange. After the pnemonia hit the fevers became more frequent and they were higher...102 degrees often. 

 

Some of you may be able to relate to this...as a female, I often feel like my symptoms are overlooked. I have a history of anxiety, depression, and alcoholism...it can be hard for doctors to take me seriously. I finally got a doctor to agree to refer me to an ENT doctor. I had to wait and see here several times with palpable nodes before she could refer me, so the process took a few months. I got my excisional biopsy of one node on the right side of my neck this past Monday. The results came back normally. Nothing there. I will see the actual report on the 5th when I go and see the surgeon for my checkup. He said it will be a quick "hi & bye" visit since things came back fine. He was also 99.99% sure I was lymphoma free (which I don't think is fair of any doctor to say...considering the symptoms I explained to him, I can only assume he thought I was embellishing  them).

 

I have an appointment to see my primary care doctor but I don't know what else she can do. I saw an infectious disease doctor about a year ago who ran all of these blood tests (including cat scratch fever!) and nothing came back abnormal. I have received the normal blood tests and my thyroid has been check...all normal.

 

The only other thing I can think of are my kidneys. My brother and I were born with a congenital defect in the tube running between the bladder and the kidney, which caused urine to backtrack back to the kidneys creating frequent infections. It was a lot worse in my brother and he ended up having to have part of his kidney removed because it had died off. For me, however, I "grew" out of it. I was on antibiotics every day for 7 years!! That can't be good..it was the early 90s though and that was the treatment for what I had going on. I had had a febrile seizure when I was 3 due to a kidney infection and have had several seizures throughout my childhood and into adulthood. The drinking didn't help' I have had more than a few withdrawal seizures. These were never diagnosed as seizures, though, because they weren't witnessed by a doctor. My brother, mom, and I often have these episodes when we experience extreme pain or body distress...I have had one from being emotionally upset. I definitely lose conciousness and flop around. One doctor said it probably had something to do with an overactive vegus nerve, calling it "vaso-vagal syncope". From my understanding that is simple fainting, though.

 

I'm clearly going off-topic but like I said - I want to throw everything out there just in case any of this sounds familiar to any of you in any way. I want to do everything I can possibly do for my health. 

po18guy
Posts: 993
Joined: Nov 2011

I have had two sub-types of non-Hodgkin's lymphoma, as well as MDS, a bone marrow cancer. Nothing that you have experienced sounds familiar to me at all. You have some neurological symptoms. Have you consulted with a neurologist? 

The World Health Organization lists 68,069 human illnesses and conditions. Our bodies are capable of producing about 150 symptoms. By simple math, that means that a single symptom may indicate as many as 450+ different illnesses. Two or more symptoms, and that number of possibles is greatly increased. Sadly, there are also many conditions which are never diagnosed because they are simply unknown and unidentifiable at this time. However, there are many tests that can still be done. It will be up to you to persevere until the ultimate cause is found. 

I was initially blown off by a doctor of the opposite sex, being given anti-anxiety drugs for stage IV lymphoma! And I am male.

Max Former Hodgkins Stage 3's picture
Max Former Hodg...
Posts: 3280
Joined: May 2012

I do not mean to interrupt Leah's thread, but I must share the following....

My wife virtually never reads anything I've written here at CSN; maybe a dozen posts over the years maximum.   But she came in to the study the other day when I was reading something written by Po, and saw his photo....she asked me, "What have you written there ?"  I asked, "Where ?"  She said, right there, at your picture !"  It was Po, not me.   Since I grew my facial hair about two years or so ago and began with my current photo, this has happened to a few other commentators, as some of you may recall.    There is no one here I'd rather favor or be associated with !

I have lost about 15 pounds in the last 2 months, and it keeps melting off. I had my annual Oncology Check, and all blood panels are normal. The NP said that since I was trying to lose, it was not highly suspicious.  I do have a lot of muscle mass loss, but she said that it was attributible to having the prostate cut out in 2015, which indirectly causes low T.

I found my wife's observation humorous, and had to share. She actually argued with me about who it was for a moment !

max

 

dana-mihaela's picture
dana-mihaela
Posts: 39
Joined: Sep 2016

I have to laugh at your wife confusion. You and PO look alike it confuses me sometime. Do you know each other? that would be nice to organize a meeting with all of us sometime...

Dana

Max Former Hodgkins Stage 3's picture
Max Former Hodg...
Posts: 3280
Joined: May 2012

Po and I have never met, Dana.  We do corrospond via CSN email a good bit, and have a great deal in common at a personal level. 

max

Max Former Hodgkins Stage 3's picture
Max Former Hodg...
Posts: 3280
Joined: May 2012

Leah,

Since you've been reading here awhile, you know that we do not write as medical professionals, although over time there have been a few MD regulars, although they do not write as such or identify publically as such.   I have no medical training at all, except clinical experiences and a good bit of college biology.  Many regulars are or have been RNs.

What we do share is well-grounded intuition or hunches regarding what seems probable or reasonable.  Exactly like Po, you do not sound to me like you are dealing with Lymphoma.  While rarely a biopsy (especially an aspirational biopsy) will result false negative, the fact that you have a negative biopsy is weighty and should relieve you.  

You introduced yourself as wondering about stressed individuals and whether things work out (or not) for writers who just cease to update.  Do not be one of those yourself, a person motivated primarily by stress.  You document already more investigation, all negative, into the possibility of Lymphoma than most who are confirmed with the diagnosis ever get.  You state that you "want to do everything possible for your health."  While this can sound healthy and reasonable, it can wander into obsession very easily.  At what point has an individual done "everything" ? You see my point.

Relax and be glad, and until substantial, emprirical reasons show themselves, seek some peace of mind regarding Lymphoma for now is my assessment of what you have shared thus far,

max

po18guy
Posts: 993
Joined: Nov 2011

Out of 68,000 known illnesses, yours may indeed be one of them. Many human illnesses are never identified, as there are suspected to be many times that 68,000 that are simply unknown. Many resolve by themselves, but many do not. So, persevere, but mystery illnesses confound many doctors. Although you may feel disregarded, that may not ultimately be the case. I mention the following with absolutely no intention of offending. If diagnostic testing ultimately reveals nothing, and I did say "If", one's mental state must then be considered. You are clearly deeply concerned and anxious over this. As potentially insulting as the term 'psychosomatic illness' may be, it is real. Symptoms which the mind produces are perceived as absolutely real. I am mentioning this only if additional diagnostic testing proves fruitless. What you seek is relief. Does it matter whether that relief is found in the physical or psychological realm?

 

ShadyGuy's picture
ShadyGuy
Posts: 392
Joined: Jan 2017

Not to get too heavily into metaphysical or religious beliefs I would state there is strong emperical evidence that good or bad thoughts (prophecies) can definitely be self fulfilling. We can actually alter the course of events in life by our thoughts. We create our own realities.  One very real scientific fact, proven over and over again in experiments, is the quantum event. A quantum event is an event whose outcome is determined by the observer. Different observers may experience different outcomes. Attitudes matter. Think good thoughts - be realistic but at the same time optimistic. Best of luck.

LeahStaub
Posts: 2
Joined: Sep 2017

I am happy that I decided to post here. I agree that I have a tendency to become obsessive and negative regarding certain aspects of my life, which is why I have been diagnosed with an anxiety disorder. I have recognized the psychosomatic and even the quantum aspects of what I am experiencing. It might even be possible that these things are creating my high fevers, which often go up to 102.

I truly appreciate your thoughtful responses and I do feel relieved that the biopsy came back negative for Lymphoma. I do hope, however, that something about my symptoms may sound familiar to someone else. As I right this, my lymph nodes have decided to get huge again on the left side of my neck. Oy vey!

po18guy
Posts: 993
Joined: Nov 2011

Is it well controlled? We live in the most anxious age in human history - which is odd, since we enjoy the finest health care and longest life-span. Go figure! Anyway, something is really bothering you, and if it is the anxiety, you can ask doctor if a change in dosing or medications might yield some positive results. Worth a try, as you deserve some peace of mind.

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