Story about Mycosis Fungoides , Sjogren.

It's complicated

Jun 15, 2020

Year Condition Began: 2008


I started noticing that I couldn't wear my contact lenses for more than a few hours w/o experiencing discomfort. That was the first time that I had an unexplained symptom.
The dry eyes and constant thirst turned out to be Sjogren's Syndrome, an autoimmune disease that affects mostly women in their fifties, and can also cause joint pain and fatigue. That was in 2008. In 2010, we were on a hike when I noticed a rash on my arms. I thought it might be poison ivy, and got some cream. This rash came and went for many years, and I usually assumed it was some type of allergy or a symptom connected to the Sjogrens. In July 2015, I noticed a lump in my groin. My doctor thought it was an infection and put me on antibiotics. The lump grew and I began to have severe pains in my stomach and back. In September I underwent a biopsy. The pains were so severe that I was hospitalized and put on a fentanyl patch. The results came back in October, Non-Hodgkin's Lymphoma, T- Cell. I was started on chemotherapy, CHOP, and responded well. Interestingly, during the time that I was on chemo, my skin was smooth and rash free. The rash did reappear after I stopped the chemo but was usually controlled by hydrocortisone cream. This past September 2019, the rash returned with a vengeance and was now on my legs and chest as well. In February I had a biopsy done and the results were not in till the end of April- mycosis fungoides.
Since then, I have found a doctor who specializes in the disease, found a medical coach, and began phototherapy. I am trying to figure out how the three conditions are connected and have been told that they are all triggered by stress. The combination of dry eyes, joint pain fatigue, and itchy skin is challenging to deal with.

Know someone who should read this story? Share it

0 comments

Login or register to leave a comment


A Mycosis Fungoides interview

View interview


Mycosis Fungoides is also known as...

Mycosis Fungoides synonyms

Do I have Mycosis Fungoides?

How do I know if I have Mycosis Fungoides?

What is Mycosis Fungoides

What is Mycosis Fungoides

Is Mycosis Fungoides hereditary?

Is Mycosis Fungoides hereditary?

Mycosis Fungoides treatments

What are the best treatments for Mycosis Fungoides?

Natural treatment of Mycosis Fungoides

Is there any natural treatment for Mycosis Fungoides?

Celebrities with Mycosis Fungoides

Celebrities with Mycosis Fungoides

Mycosis Fungoides symptoms

Which are the symptoms of Mycosis Fungoides?