Soft-Tissue Masses Not Diagnosed

We all know when we’re sick, right? Well, I’m sick, but I can’t get a diagnosis of my illness.

My symptoms have been going on for quite a while, and over time, have only increased in number and gotten worse. But my general feeling is that most doctors seem to assume that each symptom I’ve reported has a different, common condition underlying it. Yet over the past seven years, I’ve been tested, examined, re-tested and re-examined for many, many common conditions, all to no avail.

So, it seems to me that I need to see someone who specializes in uncommon diseases to get a diagnosis. But what I think I’ve found is that I can’t see one of those specialists without a diagnosis.

I am a white male in my mid-60s and on Medicare. In fall of 2021, I tested positive for the JAK2 V617F mutation and was given a diagnosis of essential thrombocythemia. But medical professionals have told me that ET most likely doesn’t explain any of the symptoms that most concern me.

Right now, I am waiting for another MRI, this one of my left thigh. If the MRI reveals/confirms a lump, I might get an appointment with an orthopedic oncologist at Mayo Phoenix. If not, then probably not. So, I don’t want to put all my eggs in that basket; meaning, I don’t want to hope that this test will finally provide an answer.

And so, I’m reaching out in any way I can think of to try to find some suggestions on what to do.

I believe an orthopedic oncologist is exactly the kind of specialist I need to see. But I also believe that my case needs a doctor with “Oz-ian” traits – a heart, brains and courage: One who will “think outside the box”, outside of the ordinary; one who would look at my case and say, “Wait a minute, this is not 20 common conditions causing these symptoms, this is a single serious illness”; one who will understand that this illness is also not common, but very likely is some unusual disease; and one who will then proceed to look for a diagnosis – an answer that cuts across and provides an explanation for most or all of these symptoms.

The symptoms that most concern me are the soft-tissue lumps or masses throughout my body. While it does not include all of my symptoms and concerns, here is a list of a number of those masses:

• A hard lump on the top left side of my head, persistent and growing larger and more tender. Nothing was noted in the report on an MRI in the fall of 2021. But in April 2022, a dermatologist said that the lump was, in her word, “bone”, and recommended a re-reading of the MRI.

• A large hard lump in one of the left front ribs, and a smaller lump near the end of that rib.

• Hard lumps near the joints nearest the fingernails of the right index and little fingers. The index finger is painful and tender. A lump between the right thumb and index finger. A lump in the knuckle between the left palm and little finger.

• A lump in the left thigh, above the knee and to the inside of the leg, which has been confirmed visually by four medical professionals. This is the mass to be examined in the MRI in May.

• A firm lump near the small toes of my right foot that appears to show up in an x-ray from July 2019. In June 2020, my PCP noted: “Plantar surface of the distal metatarsal of the right first and second is slightly more prominent than the left, and is tender to palpation.”

• A painful lump on my tongue; a small painful lump in my left groin; and a firm lump and hard lymph node in my lower right abdomen.

My focus on these symptoms is because they are physically, externally visible, which suggests to me that they should be visible on internal radiology exams as well.

Thank you for reading this message and for any comments, questions or suggestions you might have.