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Sick since 2008 with no diagnosis

Posts: 1
Joined: Nov 2015

I found this site because I continue to try to find out what is wrong with me. I fell sick in June of 2008 by waking up in the middle of the night itching like crazy. Went to the dr. and liver count was high. Had what looked like chigger bites on my stomach. My son had just returned from Boyscout camp. After 7 seven years of testing for everything imaginable and having numerous ct scans, mri's, spinal taps,xrays, bloodwork etc. I feel as though no one has checked me for Lymphoma. Several years ago I asked my dr. about the swelling above my collarbones and he said it was just fat pads. I didn't question him because I have been overweight for years (5'6" 200 lbs.) I've had a lump on my outer top arm for maybe a year now and keep forgetting to ask about it. There's no pain so I forget it's there. I was diagnosed as having pain, no real reason. Although, they've found what they say are hemangiomas in several spots on my spine, liver, spleen (7 yrs ago). I have constant under rib pain, back pain all over but mainly in the liver and pancreas areas. My Obgyn says I keep having bad paps but says he's sure I'm fine. Lately, over the last year I keep getting yeast infections. I've not lost any weight. I'm hot all of the time. They say I'm going through menapause. I'm 48 yrs. old. What concerns me is I've been to major teaching hospitals even the mayo clinic and still no diagnosis. After reading all the post about non hodgkin lymphoma, I feel like this is what I have. Is it possible to have this for 7 yrs and not be diagnosed? Please, I feel crazy and want so badly to know what is wrong so hopefully it can be treated.


Max Former Hodg...
Posts: 3693
Joined: May 2012



Most of what you describe has little or no compelling association with lymphoma. You say "no one has checked you for lymphoma," but in the previous sentence you  stated that you have been getting "numerous CT scans...", ect.   If you have had a ct for anything, it would have seen lymphoma, if it were in the area(s) scanned. I first learned that I most likely had lymphoma from a ct scan of the heart, which was not looking for lymphoma at all.  So, indirectly at least, you have been checked for lymphoma.

While some people report having had slow-moving lymphomas for some time before first diagnosis, I've never heard of a seven year delay.

No one here is a doctor and all that we submit are layman's opinions, but my layman's opinion is that your descriptions are something other than lymphoma, perhaps an assortment of things.


OO7's picture
Posts: 282
Joined: Sep 2014

I did go ten years without being diagnosis but I did not have any symptoms other than a bump I found in my breast underarm area, in fact they were looking for breast cancer and never considered lymphoma.  I will never forget around three or four years after finding it, a very prominent Doctor laughed at it.  Since then, I often think back on her arrogance and ignorance of our meeting that day.

After ten years I was very symptomatic but I discounted everything due to my age and thought it was the start of menapasuse.  It wasn't.  The lump over the years did get larger, it was quite visable as was a new lump on my jaw.  If my cancer never presented in my jaw, I may have been in big trouble.  I had yet another mammogram and they said I was fine but oh we found some more possible swollen lymph nodes, come back in six months.  Because they said it was nothing, I believed them.  What an idiot I was.  This was at the very time my neck was very swollen and noticeable.

I never had any pain until months later, it did run out of space to grow and started to hurt.

I agree with Mr. Max, you have been checked whether they said it to you or not.  Did you receive the written reports from all your tests?  Not sure I feel comfortable with you OBGYN.  Because of my history, bad pap results and I'm sure your fine statement would have me looking for a different doctor. 

In no way could I give you any advice but regrettably I want undiagnosed for a very long time.  I have a very slow growing cancer which today they don't like to treat until its symptomatic.  If found sooner I could have been stage one and not four.  I would have been laughed at or belittled.  In some way I hope this helps you.


Good luck

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