When I first started this journey of finding help I was 17 years old. It took until the age of 37 to get some of the correct diagnoses.
Too many doctors assumed that because I am an Alcoholic that my tremors were being caused by my sobriety. They also assumed my cognitive problems were due to drinking also. A few doctors said the longer I was sober the more my cognitive skills would improve. They didn’t.
I was referred to a Neurologist by my General Practitioner when my tremors first started at 35. He diagnosed me with Essential Tremors. This is a hereditary condition that no one in my family had. He had my file and history. He said one thing that helps is to have a “drink” when they get really bad and you’re in a social setting. I told him I’m a recovering alcoholic. He said “You can’t just have a glass of wine or something?”. I thought for such an incredibly intelligent person he sure was stupid. I didn’t go back to him.
Then I was finally diagnosed with Bipolar Disorder. The problem was none of meds worked the way they were supposed to. So after years of my sister telling me to get tested for Celiac Disease I finally did. I resisted previously because I didn’t have the usual symptoms like she did. I didn’t know it caused malnutrition and malabsorption of meds. I didn’t know it interferes with your cognitive skills and can cause tremors and stuttering. So I had the blood work and biopsy done and both were positive. My immune system was severely compromised. My Psychiatrist sent me to another Neurologist.
This one diagnosed me with Conversion Disorder. I didn’t want to believe him. I spent a great deal of time convincing myself it was the Celiac.
There came a time when I finally had to admit he was right.
My stutter and tremors would get worse under stress or if I was upset. I startled easily. Hearing loud men’s voices would set it off, if I felt threatened it would start, if I had a bad memory, anything that was emotionally stressful or disturbing for me would do it. A second opinion confirmed it.
Now with my kidney failure and biopsies the doctor didn’t tell me everything. I got the report sent to me of the lab work done by the Hematologist and results of the biopsies.
No one said there abnormalities of the organs in my pelvis and the soft tissue of my pelvis. No one mentioned I tested twice for Monoclonal Gammopathy or Lymphocytopenia. Also something listed under Immobility Syndrome. A disorder caused by an infectious process involving the skeletal muscles that causes muscle weakness and pain.
I have had problems with my white blood cell count for the last few years. I was diagnosed with Leukopenia. A lot of this has to do with your bone marrow. The Gammopathy and Lymphocytopenia are linked to Multiple Myeloma. So they have been looking in the wrong place for the cause of my kidney failure. All of these things are linked to kidney problems. The Monoclonal Gammopathy is a specific protein found in certain people that has to be monitored because if it isn’t you get problems like I am having. Good to know. So I will not be getting a second opinion from another Urologist. I’m going back to the Hematologist who I didn’t know had called and wanted to see me. He also told my Urologist I needed to see him. My Urologist said nothing except he wanted me go see one of his friends.
I’m truly disgusted with it all. The misdiagnosis, Medicare, my father’s treatment by the insurance company and Medicare. It’s enough to make you give up. Maybe that’s what they want so they don’t have to pay. Make everything as difficult as possible so you don’t bother.
They didn’t count on me. It might take me longer to read and understand everything but I will find a way for my father to regain some of his dignity back. I don’t usually fight for myself, but for my family I will fight with all I have.