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Wrong diagnosis and second opinions?

dcl25c
Posts: 1
Joined: Jul 2015

I went to my primary doctor for sweating and fatigue in March 2015.  I just had a baby in November 2014, so I was thinking all this was hormonal and a magic pill would fix it all.  While I was there he decided to do simple blood tests just to make sure and he noticed a rather large lymph node in the right side of my neck.  My blood work came back mostly normal, slightly elevated WBC, slightly low RBC and hematocrit low.  He decided to do a CT scan of my neck, chest, abdomen and pelvis.  The neck showed several enlarged lymph nodes which advised biopsy and a PET/CT scan as well as a very enlarged liver(no outward symptoms of this) and said could be early lymphoma. I had a biopsy of the right largest 2 lymph nodes and sent to pathology.  In the meantime I still have drenching night sweats where I change my clothes 2 to 3 times a night and sleep on towels, fevers that stay around 100 to 100.5 off and on with chills, fatigue, itching that is never satisfying, dizziness and shortness of breath.  The biopsy results came back and stated "consistant with Toxoplasmosis Lymphadenitis".  I was sent to an Infectious disease doctor where he ran more bloodwork.  With meeting him for the first time, he flat out told me "Who said you have toxo? Did the pathologist actually see a parasite?  People with immune disorders rarely get toxo, much less someone with a normal immune system, Ill run test, but you dont have toxo."  Sure enough, my blood serum came back negative for Toxoplasmosis, or any other virus.  I am unsure what to do from here.  The doctor was originally testing for lymphoma.  My primary had the biopsied tissue sent to a specialized cancer center for a second opinion.  He told me it was a lengthy process but they will handle it.  I had asked about the PET/CT scan the radiologist recommended and was told the insurance denied it without a cancer diagnosis so they are waiting on biopsy results.  I feel like a sitting duck.  Anyone else have the wrong diagnosis before? Thanks. Debra

alihamilton's picture
alihamilton
Posts: 348
Joined: Jan 2004

That is so frustrating. How can the insurance company say you have to be diagnosed with cancer before you have the ct/pet scan when it is that scan that will help with your diagnosis! Lymphoma can be difficult to diagnose, particularly the type but biopsy is really the best way. However a scan can suggest lymphoma by the manner in which the lymph nodes are presented. Wish I could suggest a way forward for you. 

Anonymous user (not verified)

toxoplasmosis, spread by cats feces, is one of the most underdiagnosed diseases around. If you clean cat litter boxes, work in flower beds where cats may defecate or eat uncoked meat ( steak tartar etc) its always a possibility and some of the symptoms closely mimic lymphoma. Toxo is forever. There are two tests for toxo, for active disease and for antibodies. When your body fights it off it goes into the brain and creates a cyst around itself to protect it from antibodies. When you are in a weakened state it can return. It would be very unusual to see one of these microbe sized parasites. I would go and make sure to get both tests, each from two different labs. in France and Eastern Europe where uncooked meat is routinely eaten, it is estimated that as many as 50% of the population is infected. Worth looking into. 

 

 

 

 

Max Former Hodgkins Stage 3's picture
Max Former Hodg...
Posts: 3307
Joined: May 2012

Dcl,

I willl mostly address two questions that you posed: The first relates to the title of your post:  "Do people get the wrong diagnosis ?"  Answer: Yes, it happens a lot.  Most people are correctly diagnosed first go-round, but enough don't to make misdiagnosis always a possibility.

I do not follow your pathology description. You say the doctor sent the results for "a second opinion." He did not have a first opinion yet (regarding lymphoma), so why already send them for a second ? I did not even know that that was medically possible.  Most local labs are usually accurate. Why not use them first ? And you state he was initially testing for cancer. What did he change to ? Why ?  But, we have had two or more writers in recent months who had biopsies "delayed" and then "delayed again," so perhaps it is not so uncommon. At least one, if not both, were shortly after delivering a child.

Your make the comment "I'm unsure what to do from here."  Answer: You wait. You wait on the pathology report, which seldom takes more than a week to return, and usually not that long.  In the holistic scheme of having cancer, being diagnosed, and being treated, a week, or two weeks, is nothing.  It will seem like an eternity, but clinically, it is a short period.   I know it is nerve-wracking; I have waited twice for positive biopisies to return regarding my two cancers.   The first was very upsetting; the second I yawned at.  In fact, I had requested that the doctor just call me with the results.  No reason to drive in and waste gasoline.  Lymphoma is seldom a death sentence (nearly all of the 40 or so common strains are very treatable, whereas prostate cancer  [my second cancer] is usually very indolent (slow-moving), and even newly-discovered cases of Stage 4 have long, long average survival times).  Also, your CT results and near-normal blood work means a little waiting is not life threatening in your case.

Another thought:  You have not (yet) been misdiagnosed, of course, because you have not been diagnosed at all; that is, no doctor has yet said to you, "You have disease x."   After you get a diagnosis,  then you can consider second opinions, which are never a bad thing, just expensive.  In cases that are clear-cut and seem to have no ambiguity, a second opinion is less necessary.  Others, where there is ambiguity or a secondary diagnosis that seems stongly possible, a second opinion is a good idea.

Impressionistic:

Your symptoms sound like lymphoma to me. I would expect the biopsy to be positive. For one thing, you described lymphoma "B-Symptoms" perfectly.  Primary care doctors, when looking at a likely first-time cancer diagnosis in a patient, quite commonly start listing the other things that the patient could have. It then becomes for them a process of elimination, which of course is thorough and a good thing, but it muddies the probable in the patient's thinking while the alternatives are gone through.    You might have some rare, exotic disease; you should know in a week or thereabout, but it is anyone's guess whether such a disease would be as treatable as lymphoma; it might be less so.

I wish you well and a peaceful holiday. I would try to not think of the medical issues at all at this point, easier said than done.  I am commencing July 4th therapy out of a can as we speak,

max

https://en.wikipedia.org/wiki/B_symptoms

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Anonymous user (not verified)

just thought due to some personal experiences overseas that toxo is a very real possibility.

mine is in a bottle. Genuine English Bitters, known here as IPA.

Animasgirl
Posts: 3
Joined: Jul 2015

After cleaning flood debris and then starting work as a substitute teacher I had horrible congestion. I went to the Doctor as well as the local want to be hospital ....for 12 weeks I was treated for pneumonia. I begged for a scan and even then I awas told its a crap shoot.I went to a larger city where the emergency doctor said "has anyone told you,You have lymphoma

Anonymous user (not verified)

is Wow. Things like this should not happen - ever.

eshill
Posts: 1
Joined: Jul 2015

Hi.

I am a NHL survivor.  I just have a friend that went through the same thing.  Everything looked liked lymphoma.  She had a cough, was run down, and had masses all over.  She had the whole battery of tests amd biopsies done at an excellent research university hospital.  However all of the cell tests come back negative for cancer.  She has a rare immune disorder called Common Variable Immune Deficiency CVID.  You should see an immunologist.   The condition is managed with antibody infusions.

 

 

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