My Search goes Nationwide.
Letter Requesting Medical Assistance
My most recent attempts to contact my doctor here in Portland have gone unanswered, so I am expanding my search. I have located two doctors—one in Houston and one in Kansas City—who have experience treating Hashimoto’s Encephalopathy, and I am writing to them for help.
Salutations,
I am writing to see if you might possibly be able to help me.
In January 2006, I began developing various neurological symptoms, including facial paralysis, right-sided weakness, numbness, gait problems, and others. Around the same time, I was diagnosed with thyroid cancer. The cancer is being treated, but the neurological symptoms have continued and are getting worse.
After being told twice that I had brain cancer, and undergoing multiple MRIs, CAT scans, and other tests (including four spinal taps—three in one month), it was decided to begin treating me for Hashimoto’s Encephalopathy. The treatment involved three days of Methylprednisone at 1g per day. I needed a cane to walk in on the first day—but I walked out without it. Through trial and error, we developed a regimen of three treatments followed by one every four weeks, then another after four more weeks, and so on.
These treatments have reversed some of my symptoms and slowed the deterioration, but I am still getting worse. The treatments are no longer as effective, and I’ve begun getting sick afterward. I have been tested for adrenal insufficiency, and the results were negative.
My endocrinologist, who is treating my thyroid cancer, tells me that thyroid cancer cannot cause paraneoplastic syndrome. The most recent PET scan showed only two small spots that might be cancer, and we plan to rescan in September.
To complicate things further, my neurologist has given up on my case and asked my primary care physician to manage the steroid treatments. However, my PCP is uncomfortable doing so unless I am considered stable.
I found your name through the Hashimoto’s Encephalopathy Facebook group.
So my question is: can you help me? There are several ways you might be able to assist. Could you refer me to someone in Portland, Oregon—or anywhere on the West Coast—who has experience treating this condition? If not, is there any way I could work with you directly? Traveling to your city would be difficult, but perhaps we could coordinate care remotely.
Over the past five years, I have worked with five different neurologists. Each has either given up without finding an answer or moved away. I am not difficult to work with—only my condition is. I truly need help. It is difficult to watch your life slowly slip away.
You have my permission to contact my doctors (list provided on a separate page) for additional information.
Thank you for your time and consideration.
Odell
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