Is there anyone who had to deal or is dealing with a Lymphoma or Leukemia cancer after having ME for years?
My ME started in 1970 with a nasty case of Epstein Barr. I was pretty ill with very high fevers that just wouldn't go and was hospitalized for 4 months. At that time I lived in the Netherlands. I was 18 years and never recovered. The Epstein Barr diagnose went to Chronic Epstein Barr, to Severe Chronic Epstein Barr Virus which later was put under the ME umbrella. In the 1980's I received the diagnose ME, which was at that time a recognized illness in the Netherlands. Looking back it is insane how this all changed.
After moving to Oregon in 2005 and becoming bed/home bound, one of my main pain complaints was the horrible disabling pain in my spinal cord and legs. The spinal cord pain is because of the inflammation caused by viruses. A few months ago I started to feel painful hips, I contributed this to my immobile being and maybe even arthritis in my hip joints. However a month ago a swelling started to form not exactly on my hip as well on the side on my thigh. The pain became hard to deal with. This swelling was very very painful, nothing muscular but a feeling of my leg bone was hurting really much, so much that it keeps awake and it's impossible to lie on at night. Than my other side also a swelling is started to form, hard unmovable swelling. Yesterday my doc urged me to get a CT scan, his first thought after examined it was Lymphoma.
We are very diligent in testing me every 2 months or so to check on my white blood cell count and other cancer markers in my blood because I have such a high EBV count that won't go down. Up till now nothing specific showed up. Waiting for the results from yesterdays' test. I'm very lucky that we have a phlebotomist in the office that, over the years, knows me and my veins very well ;-) So I don't have to go somewhere else, very grateful for that.
I'm still in shock, even though as a high EBV or CMV ME patient you keep the chance of Lymphoma or Leukemia in the back of your head, when it is a possibility it actually happens to you you're in shock. At least I am.
I think it would help if I could hear from others who had to go through this and how they dealt with it. Feel free to contact me in private or here in this thread.
My ME started in 1970 with a nasty case of Epstein Barr. I was pretty ill with very high fevers that just wouldn't go and was hospitalized for 4 months. At that time I lived in the Netherlands. I was 18 years and never recovered. The Epstein Barr diagnose went to Chronic Epstein Barr, to Severe Chronic Epstein Barr Virus which later was put under the ME umbrella. In the 1980's I received the diagnose ME, which was at that time a recognized illness in the Netherlands. Looking back it is insane how this all changed.
After moving to Oregon in 2005 and becoming bed/home bound, one of my main pain complaints was the horrible disabling pain in my spinal cord and legs. The spinal cord pain is because of the inflammation caused by viruses. A few months ago I started to feel painful hips, I contributed this to my immobile being and maybe even arthritis in my hip joints. However a month ago a swelling started to form not exactly on my hip as well on the side on my thigh. The pain became hard to deal with. This swelling was very very painful, nothing muscular but a feeling of my leg bone was hurting really much, so much that it keeps awake and it's impossible to lie on at night. Than my other side also a swelling is started to form, hard unmovable swelling. Yesterday my doc urged me to get a CT scan, his first thought after examined it was Lymphoma.
We are very diligent in testing me every 2 months or so to check on my white blood cell count and other cancer markers in my blood because I have such a high EBV count that won't go down. Up till now nothing specific showed up. Waiting for the results from yesterdays' test. I'm very lucky that we have a phlebotomist in the office that, over the years, knows me and my veins very well ;-) So I don't have to go somewhere else, very grateful for that.
I'm still in shock, even though as a high EBV or CMV ME patient you keep the chance of Lymphoma or Leukemia in the back of your head, when it is a possibility it actually happens to you you're in shock. At least I am.
I think it would help if I could hear from others who had to go through this and how they dealt with it. Feel free to contact me in private or here in this thread.