Today, about two months and two weeks after my heart attack, I went back to continue the high dose IVIG (intravenous immunoglobulin G) treatments that were recommended by the doctors at the Mayo Clinic last summer.
I am just back home and feel good enough to try to knock out a real blog post. It has been a while since I have felt like doing that. I don’t think it can be the IVIG this fast, but perhaps getting what was for me a pretty good night’s sleep and a nap in the infusion chair has helped me achieve a level of truly beneficial rest.
I don’t want to be repetitive but for those who may be reading my blog for the first time, I suffer from chronic disease.
My primary disease is called paraneoplastic neurological syndrome.
The name “para-neoplastic” basically describes its cause: one meaning of “para” is “side by side” or “with” and “neoplastic” means “of or relating to a neoplasm” which is a tumor or cancer. So, a paraneoplastic syndrome exists side by side or along with cancer.
These syndromes are marked by antibodies that are found in the blood serum. Many have been identified but there are many more yet to be identified. Simply put, the disease is the body’s own immune system triggered by a cancer that is now fighting vital parts of the body itself. In my case, it seems to be focused on the central nervous system creating a lot of neuropathic pain and autonomic dysfunction.
My cancer was and is Stage 4 Melanoma. In 2008, I had surgery to remove a malignant melanoma on my upper left thigh. By the time of the surgery, the cancer had already spread to the lymph nodes. In 2009, when a metastatic lesion was found, I was told that my chances at 5-year survival were about 1 in 9. Not very good. Later that year I was hospitalized by what was initially diagnosed as Tranverse Myelitis. Whatever the disease, I believe that it progressed into the paraneoplastic syndrome I have now by the end of 2010.
I have also had two heart attacks, at least one TIA (mini-stroke), pulmonary emboli and pneumonia at least 4 times.
My main complaints with my chronic illness are
(1) pain that never, ever stops,
(2) neurological deficits that make it hard to walk and to properly care for myself, and
(3) brain fog or cognitive confusion that adds time to completing simple tasks – like writing this blog or posting to Facebook.
I was referred to the Mayo Clinic in 2011 and they confirmed my home neurologist’s diagnosis of the paraneoplastic syndrome but also added that I likely suffered from secondary chronic fatigue syndrome and if I didn’t have all the other problems, I would meet the criteria for a fibromyalgia diagnosis that would account for my widespread pain.
And to top it off, the treatment might be worse than the disease.
When I first received the high dose of IVIG back in August 2014, I suffered a side effect known as aseptic meningitis. Basically, a bad headache and a very high fever that lasted about three or four days. And likely, the even larger dose received in October 2014 was at least a contributing cause to my second heart attack on October 27, 2014. But there aren’t many options and most people I have consulted think this is the best shot to keep me as stable as possible for as long as possible.
Okay, enough about me. What I want to write about today is chronic pain / chronic illness awareness. Let me start with the following meme I found on Google:
I have probably reposted this meme on my own Facebook page. I support all of the dates on the calendar to try and spread awareness. And I want to state emphatically that we need an effective campaign (like breast cancer awareness) to communicate to those who do not suffer from an “invisible” chronic disease what hell we go though every single day.
But regardless of the truth of the statistic, I don’t think that saying 1/4th to 1/3rd of the US population suffers from a common illness is a message that can create credibility and understanding among the general population. I think this kind of message only reinforces some of the stereotypes that have developed around those who suffer from “invisible” chronic diseases. For example:
Chronic pain is REAL. I have written about it in my blog – see the post: https://mcreyscope.com/2014/08/24/chronic-pain-its-real-and-what-can-we-do-about-it/
I will add to my prior post by saying that in my reading online and off, there seems to be two commonalities about chronic diseases that produce chronic pain: (1) there is some kind of abnormality with the autoimmune system and (2) there is damage to the central nervous system (the brain and spinal cord taken together).
And there is one thing I have learned as I have researched these two things: we know very, very little about each one. I think that this explains why treatment is a guessing game and why doctors are reluctant to take on patients they don’t understand.
Long story short, I think we need to somehow build awareness around these two issues. However, it can’t be done without somehow also building awareness and credibility about the reality of chronic pain itself. I think I will try to put my thoughts together better and write more about this issue in the coming days, weeks, and months.
We need more research into autoimmune diseases and into how the brain and spinal cord work.
Fibromyalgia, ME/Chronic Fatigue, Headaches, Back Pain, Arthritis, Neuropathies, etc. all have things in common and those common elements need to be researched without bias.
Even today I have read articles about research projects that sound promising until you see the findings which much too often take a psychological slant rather than the possibility of injury or other abnormalities to the autoimmune system or the central nervous system.
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